New to the group

[Guest guest]

Nikki,

Thanks for sharing your story! You are an amazing mother and person. I am so

sorry that your partner passed away. Brett is fortunate to have you as a mom!

Like Joan said when shirts got wet (or poopy-which seemed to happen quite often

for us) we did the same thing. We used Cetaphil or Aveeno soap. Sometimes it was

so bad we had to cut some of the shirt, I know they don't recommend doing that,

but we had to when it got really bad.

Wishing you and Brett all the best!

Mom to:

Tyler (7)

Matson (4)diagnosed at 9 mos-currently 58 thoracic/55 lumbar-casting/bracing 3

years-awaiting growing rod surgery March 24 with new MAGEC magnetic lengthening

device

Lily (3)

> >

> > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so

much with your baby and on top of it, lost your husband. I can't

imagine the strength you must have. We are here to help you and support

you. We all know what you are going through and have been in your shoes when

it comes to casting your child. I TOO thought that casting sounded a little

barbaric, but quite the opposite, it is gentle and slow. Your child

will really adjust very quickly. Kids are so resilient. You will get into a

routine of diapering and bathing and it will be everyday life for you and

him. When my son wets on the undershirt, we pull it down as far as we can and

clean it with Cetafil soap and warm water then blow dry the shirt on cool

(don't want to burn the baby). I learned this from the ladies on this group.

They are all so helpful and wonderful. Ask any questions and please turn to us

for support

> >

> >

> >  Joan

> > mom to Hayden 3

> > 43 degrees down from 62

> > Cast number 3

> > Treated at ish Rite Hospital

> > Dallas, TX

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: nikki062508 <nikkineary@ ...>

> > To: infantile_scoliosis @yahoogroups. com

> > Sent: Thu, February 18, 2010 12:51:35 AM

> > Subject: [infantile_scoliosi s] New to the group

> >

> >  

> > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast -

he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day

of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> >

> > Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

> >

> > I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

> >

> > Sorry to go on so long, I just wanted to get my story out there. If anyone

has any advice on how to get through this, I would really appreciate it! Brett

has just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

> >

> > Thanks for reading! And I appreciate any advice you have to offer.

> >

> > PS - has anyone had a problem with their child's undershirt getting wet? If

so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

> >

>

[Guest guest]

I know! I've had so many talks with her regarding other issues and she will do

good for a little while and then start to do as she pleases again! I haven't

talked to her since I picked him up and saw how wet he was, I'm so frustrated

(with her) I'm afraid I will say something I shouldn't so I've been deliberately

avoiding her. BTW she is the paternal grandma, my mom does what I ask,

thankfully - I couldn't handle 2 of them. =) I'm going to try the Cetaphil a

little later today however, this morning he broke out with a pretty substantial

rash. It is under the cast on his lower belly down to his privates and a little

on his legs/hips. Any suggestions? I don't know what to do??? I'm going to

try to read through here and see if I can find something but I don't have a lot

of free time left....

Thanks!!!!

> >

> > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so

much with your baby and on top of it, lost your husband. I can't

imagine the strength you must have. We are here to help you and support

you. We all know what you are going through and have been in your shoes when

it comes to casting your child. I TOO thought that casting sounded a little

barbaric, but quite the opposite, it is gentle and slow. Your child

will really adjust very quickly. Kids are so resilient. You will get into a

routine of diapering and bathing and it will be everyday life for you and

him. When my son wets on the undershirt, we pull it down as far as we can and

clean it with Cetafil soap and warm water then blow dry the shirt on cool

(don't want to burn the baby). I learned this from the ladies on this group.

They are all so helpful and wonderful. Ask any questions and please turn to us

for support

> >

> >

> >  Joan

> > mom to Hayden 3

> > 43 degrees down from 62

> > Cast number 3

> > Treated at ish Rite Hospital

> > Dallas, TX

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: nikki062508 <nikkineary@ ...>

> > To: infantile_scoliosis @yahoogroups. com

> > Sent: Thu, February 18, 2010 12:51:35 AM

> > Subject: [infantile_scoliosi s] New to the group

> >

> >  

> > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast -

he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day

of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> >

> > Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

> >

> > I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

> >

> > Sorry to go on so long, I just wanted to get my story out there. If anyone

has any advice on how to get through this, I would really appreciate it! Brett

has just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

> >

> > Thanks for reading! And I appreciate any advice you have to offer.

> >

> > PS - has anyone had a problem with their child's undershirt getting wet? If

so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

> >

>

[Guest guest]

I know! I've had so many talks with her regarding other issues and she will do

good for a little while and then start to do as she pleases again! I haven't

talked to her since I picked him up and saw how wet he was, I'm so frustrated

(with her) I'm afraid I will say something I shouldn't so I've been deliberately

avoiding her. BTW she is the paternal grandma, my mom does what I ask,

thankfully - I couldn't handle 2 of them. =) I'm going to try the Cetaphil a

little later today however, this morning he broke out with a pretty substantial

rash. It is under the cast on his lower belly down to his privates and a little

on his legs/hips. Any suggestions? I don't know what to do??? I'm going to

try to read through here and see if I can find something but I don't have a lot

of free time left....

Thanks!!!!

> >

> > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so

much with your baby and on top of it, lost your husband. I can't

imagine the strength you must have. We are here to help you and support

you. We all know what you are going through and have been in your shoes when

it comes to casting your child. I TOO thought that casting sounded a little

barbaric, but quite the opposite, it is gentle and slow. Your child

will really adjust very quickly. Kids are so resilient. You will get into a

routine of diapering and bathing and it will be everyday life for you and

him. When my son wets on the undershirt, we pull it down as far as we can and

clean it with Cetafil soap and warm water then blow dry the shirt on cool

(don't want to burn the baby). I learned this from the ladies on this group.

They are all so helpful and wonderful. Ask any questions and please turn to us

for support

> >

> >

> >  Joan

> > mom to Hayden 3

> > 43 degrees down from 62

> > Cast number 3

> > Treated at ish Rite Hospital

> > Dallas, TX

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: nikki062508 <nikkineary@ ...>

> > To: infantile_scoliosis @yahoogroups. com

> > Sent: Thu, February 18, 2010 12:51:35 AM

> > Subject: [infantile_scoliosi s] New to the group

> >

> >  

> > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast -

he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day

of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> >

> > Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

> >

> > I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

> >

> > Sorry to go on so long, I just wanted to get my story out there. If anyone

has any advice on how to get through this, I would really appreciate it! Brett

has just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

> >

> > Thanks for reading! And I appreciate any advice you have to offer.

> >

> > PS - has anyone had a problem with their child's undershirt getting wet? If

so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

> >

>

[Guest guest]

I know! I've had so many talks with her regarding other issues and she will do

good for a little while and then start to do as she pleases again! I haven't

talked to her since I picked him up and saw how wet he was, I'm so frustrated

(with her) I'm afraid I will say something I shouldn't so I've been deliberately

avoiding her. BTW she is the paternal grandma, my mom does what I ask,

thankfully - I couldn't handle 2 of them. =) I'm going to try the Cetaphil a

little later today however, this morning he broke out with a pretty substantial

rash. It is under the cast on his lower belly down to his privates and a little

on his legs/hips. Any suggestions? I don't know what to do??? I'm going to

try to read through here and see if I can find something but I don't have a lot

of free time left....

Thanks!!!!

> >

> > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so

much with your baby and on top of it, lost your husband. I can't

imagine the strength you must have. We are here to help you and support

you. We all know what you are going through and have been in your shoes when

it comes to casting your child. I TOO thought that casting sounded a little

barbaric, but quite the opposite, it is gentle and slow. Your child

will really adjust very quickly. Kids are so resilient. You will get into a

routine of diapering and bathing and it will be everyday life for you and

him. When my son wets on the undershirt, we pull it down as far as we can and

clean it with Cetafil soap and warm water then blow dry the shirt on cool

(don't want to burn the baby). I learned this from the ladies on this group.

They are all so helpful and wonderful. Ask any questions and please turn to us

for support

> >

> >

> >  Joan

> > mom to Hayden 3

> > 43 degrees down from 62

> > Cast number 3

> > Treated at ish Rite Hospital

> > Dallas, TX

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: nikki062508 <nikkineary@ ...>

> > To: infantile_scoliosis @yahoogroups. com

> > Sent: Thu, February 18, 2010 12:51:35 AM

> > Subject: [infantile_scoliosi s] New to the group

> >

> >  

> > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast -

he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day

of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> >

> > Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

> >

> > I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

> >

> > Sorry to go on so long, I just wanted to get my story out there. If anyone

has any advice on how to get through this, I would really appreciate it! Brett

has just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

> >

> > Thanks for reading! And I appreciate any advice you have to offer.

> >

> > PS - has anyone had a problem with their child's undershirt getting wet? If

so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

> >

>

[Guest guest]

Thank you!

Haha! I already cut the shirt - unfortunately it was prior to this little

incident. =) Good one on my part! But it was too long, so now I don't have a

lot left to cut. Guess I learned my lesson on that one!

> > >

> > > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with

so much with your baby and on top of it, lost your husband. I can't

imagine the strength you must have. We are here to help you and support

you. We all know what you are going through and have been in your shoes when

it comes to casting your child. I TOO thought that casting sounded a little

barbaric, but quite the opposite, it is gentle and slow. Your child

will really adjust very quickly. Kids are so resilient. You will get into a

routine of diapering and bathing and it will be everyday life for you and

him. When my son wets on the undershirt, we pull it down as far as we can and

clean it with Cetafil soap and warm water then blow dry the shirt on cool

(don't want to burn the baby). I learned this from the ladies on this group.

They are all so helpful and wonderful. Ask any questions and please turn to us

for support

> > >

> > >

> > >  Joan

> > > mom to Hayden 3

> > > 43 degrees down from 62

> > > Cast number 3

> > > Treated at ish Rite Hospital

> > > Dallas, TX

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: nikki062508 <nikkineary@ ...>

> > > To: infantile_scoliosis @yahoogroups. com

> > > Sent: Thu, February 18, 2010 12:51:35 AM

> > > Subject: [infantile_scoliosi s] New to the group

> > >

> > >  

> > > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast

- he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day

of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> > >

> > > Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

> > >

> > > I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

> > >

> > > Sorry to go on so long, I just wanted to get my story out there. If anyone

has any advice on how to get through this, I would really appreciate it! Brett

has just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

> > >

> > > Thanks for reading! And I appreciate any advice you have to offer.

> > >

> > > PS - has anyone had a problem with their child's undershirt getting wet?

If so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

> > >

> >

>

[Guest guest]

Thank you!

Haha! I already cut the shirt - unfortunately it was prior to this little

incident. =) Good one on my part! But it was too long, so now I don't have a

lot left to cut. Guess I learned my lesson on that one!

> > >

> > > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with

so much with your baby and on top of it, lost your husband. I can't

imagine the strength you must have. We are here to help you and support

you. We all know what you are going through and have been in your shoes when

it comes to casting your child. I TOO thought that casting sounded a little

barbaric, but quite the opposite, it is gentle and slow. Your child

will really adjust very quickly. Kids are so resilient. You will get into a

routine of diapering and bathing and it will be everyday life for you and

him. When my son wets on the undershirt, we pull it down as far as we can and

clean it with Cetafil soap and warm water then blow dry the shirt on cool

(don't want to burn the baby). I learned this from the ladies on this group.

They are all so helpful and wonderful. Ask any questions and please turn to us

for support

> > >

> > >

> > >  Joan

> > > mom to Hayden 3

> > > 43 degrees down from 62

> > > Cast number 3

> > > Treated at ish Rite Hospital

> > > Dallas, TX

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: nikki062508 <nikkineary@ ...>

> > > To: infantile_scoliosis @yahoogroups. com

> > > Sent: Thu, February 18, 2010 12:51:35 AM

> > > Subject: [infantile_scoliosi s] New to the group

> > >

> > >  

> > > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast

- he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day

of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> > >

> > > Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

> > >

> > > I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

> > >

> > > Sorry to go on so long, I just wanted to get my story out there. If anyone

has any advice on how to get through this, I would really appreciate it! Brett

has just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

> > >

> > > Thanks for reading! And I appreciate any advice you have to offer.

> > >

> > > PS - has anyone had a problem with their child's undershirt getting wet?

If so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

> > >

> >

>

[Guest guest]

Hi Nikki

I always find it very interesting when I hear of another child having low muscle tone along with the scoliosis. My son Peyon (also 19 months), has hypotonia. We have had all the blood tests, MRI's everything done but we still have no diagnosis for why he has it. Our last resort is a muscle biopsy. Ive been putting it off because I hear its quite painful. If you could shed a little light on what a muscle biopsy is like that would be great. I intend to have it done at the next casting because he will already be under so they wont have to put him under a second time for the biopsy. Do you think this is a good idea? Also how is your son? Does he crawl, walk, sit yet. My son also gets OT and PT and daily excersise too and yes the cast does make it harder......a lot harder. But...when I think about what the alternative would be without the cast I'm greatful to have it. Is your son ultra

fussy with his low tone? Does he have much language yet? I have heard that kids with low tone have a slight speech delay, do you find that? Anyway any information you could share would be great but if you would rather not I totally understand.

Lynn

Subject: New to the groupTo: infantile_scoliosis Received: Wednesday, February 17, 2010, 10:51 PM

Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now

with the cast even more. =(I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant. Thanks for reading! And I appreciate any advice you have to offer.PS - has anyone had a problem with their child's undershirt getting wet? If so,

what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!

Looking for the perfect gift? Give the gift of Flickr!

[Guest guest]

Hi Nikki

I always find it very interesting when I hear of another child having low muscle tone along with the scoliosis. My son Peyon (also 19 months), has hypotonia. We have had all the blood tests, MRI's everything done but we still have no diagnosis for why he has it. Our last resort is a muscle biopsy. Ive been putting it off because I hear its quite painful. If you could shed a little light on what a muscle biopsy is like that would be great. I intend to have it done at the next casting because he will already be under so they wont have to put him under a second time for the biopsy. Do you think this is a good idea? Also how is your son? Does he crawl, walk, sit yet. My son also gets OT and PT and daily excersise too and yes the cast does make it harder......a lot harder. But...when I think about what the alternative would be without the cast I'm greatful to have it. Is your son ultra

fussy with his low tone? Does he have much language yet? I have heard that kids with low tone have a slight speech delay, do you find that? Anyway any information you could share would be great but if you would rather not I totally understand.

Lynn

Subject: New to the groupTo: infantile_scoliosis Received: Wednesday, February 17, 2010, 10:51 PM

Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now

with the cast even more. =(I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant. Thanks for reading! And I appreciate any advice you have to offer.PS - has anyone had a problem with their child's undershirt getting wet? If so,

what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!

Looking for the perfect gift? Give the gift of Flickr!

[Guest guest]

Hi Nikki

I always find it very interesting when I hear of another child having low muscle tone along with the scoliosis. My son Peyon (also 19 months), has hypotonia. We have had all the blood tests, MRI's everything done but we still have no diagnosis for why he has it. Our last resort is a muscle biopsy. Ive been putting it off because I hear its quite painful. If you could shed a little light on what a muscle biopsy is like that would be great. I intend to have it done at the next casting because he will already be under so they wont have to put him under a second time for the biopsy. Do you think this is a good idea? Also how is your son? Does he crawl, walk, sit yet. My son also gets OT and PT and daily excersise too and yes the cast does make it harder......a lot harder. But...when I think about what the alternative would be without the cast I'm greatful to have it. Is your son ultra

fussy with his low tone? Does he have much language yet? I have heard that kids with low tone have a slight speech delay, do you find that? Anyway any information you could share would be great but if you would rather not I totally understand.

Lynn

Subject: New to the groupTo: infantile_scoliosis Received: Wednesday, February 17, 2010, 10:51 PM

Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now

with the cast even more. =(I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant. Thanks for reading! And I appreciate any advice you have to offer.PS - has anyone had a problem with their child's undershirt getting wet? If so,

what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!

Looking for the perfect gift? Give the gift of Flickr!

[Guest guest]

Sounds like you have lots of help though and that is a good thing. Sorry your little guy has a bad rash now due to the wetness under the cast. I guess I would try to "air" it out as much as you can, and also keep trying the hairdryer on cool. Maybe when he is sleeping, unless you think the dryer will wake him. My son can sleep through lots of noise. I would say put desitin around the private area, but am not sure about the rash on his belly. If you do use desitin on the belly, you need to keep that area open to the air, so pull the shirt down and let it really dry and air out. Poor baby. Hope his rash is better in the morning. Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Fri, February 19, 2010 4:18:46 PMSubject: Re: New to the group

I know! I've had so many talks with her regarding other issues and she will do good for a little while and then start to do as she pleases again! I haven't talked to her since I picked him up and saw how wet he was, I'm so frustrated (with her) I'm afraid I will say something I shouldn't so I've been deliberately avoiding her. BTW she is the paternal grandma, my mom does what I ask, thankfully - I couldn't handle 2 of them. =) I'm going to try the Cetaphil a little later today however, this morning he broke out with a pretty substantial rash. It is under the cast on his lower belly down to his privates and a little on his legs/hips. Any suggestions? I don't know what to do??? I'm going to try to read through here and see if I can find something but I don't have a lot of free time left....Thanks!!!!> >> > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much with your baby and on top of it, lost your husband. I can't imagine the strength you must have. We are here to help you and support you. We all know what you are going through and have been in your shoes when it comes to casting your child. I TOO thought that

casting sounded a little barbaric, but quite the opposite, it is gentle and slow. Your child will really adjust very quickly. Kids are so resilient. You will get into a routine of diapering and bathing and it will be everyday life for you and him. When my son wets on the undershirt, we pull it down as far as we can and clean it with Cetafil soap and warm water then blow dry the shirt on cool (don't want to burn the baby). I learned this from the ladies on this group. They are all so helpful and wonderful. Ask any questions and please turn to us for support> > > > > >  Joan> > mom to Hayden 3> > 43 degrees down from 62> > Cast number 3> > Treated at ish Rite Hospital > > Dallas, TX > > > > > > > > > > ____________ _________ _________

__> > From: nikki062508 <nikkineary@ ...>> > To: infantile_scoliosis @yahoogroups. com> > Sent: Thu, February 18, 2010 12:51:35 AM> > Subject: [infantile_scoliosi s] New to the group> > > >  > > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)> > > > Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and

several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(> > > > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!> > > > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I

would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant. > > > > Thanks for reading! And I appreciate any advice you have to offer.> > > > PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!> >>

[Guest guest]

Sounds like you have lots of help though and that is a good thing. Sorry your little guy has a bad rash now due to the wetness under the cast. I guess I would try to "air" it out as much as you can, and also keep trying the hairdryer on cool. Maybe when he is sleeping, unless you think the dryer will wake him. My son can sleep through lots of noise. I would say put desitin around the private area, but am not sure about the rash on his belly. If you do use desitin on the belly, you need to keep that area open to the air, so pull the shirt down and let it really dry and air out. Poor baby. Hope his rash is better in the morning. Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Fri, February 19, 2010 4:18:46 PMSubject: Re: New to the group

I know! I've had so many talks with her regarding other issues and she will do good for a little while and then start to do as she pleases again! I haven't talked to her since I picked him up and saw how wet he was, I'm so frustrated (with her) I'm afraid I will say something I shouldn't so I've been deliberately avoiding her. BTW she is the paternal grandma, my mom does what I ask, thankfully - I couldn't handle 2 of them. =) I'm going to try the Cetaphil a little later today however, this morning he broke out with a pretty substantial rash. It is under the cast on his lower belly down to his privates and a little on his legs/hips. Any suggestions? I don't know what to do??? I'm going to try to read through here and see if I can find something but I don't have a lot of free time left....Thanks!!!!> >> > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much with your baby and on top of it, lost your husband. I can't imagine the strength you must have. We are here to help you and support you. We all know what you are going through and have been in your shoes when it comes to casting your child. I TOO thought that

casting sounded a little barbaric, but quite the opposite, it is gentle and slow. Your child will really adjust very quickly. Kids are so resilient. You will get into a routine of diapering and bathing and it will be everyday life for you and him. When my son wets on the undershirt, we pull it down as far as we can and clean it with Cetafil soap and warm water then blow dry the shirt on cool (don't want to burn the baby). I learned this from the ladies on this group. They are all so helpful and wonderful. Ask any questions and please turn to us for support> > > > > >  Joan> > mom to Hayden 3> > 43 degrees down from 62> > Cast number 3> > Treated at ish Rite Hospital > > Dallas, TX > > > > > > > > > > ____________ _________ _________

__> > From: nikki062508 <nikkineary@ ...>> > To: infantile_scoliosis @yahoogroups. com> > Sent: Thu, February 18, 2010 12:51:35 AM> > Subject: [infantile_scoliosi s] New to the group> > > >  > > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)> > > > Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and

several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(> > > > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!> > > > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I

would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant. > > > > Thanks for reading! And I appreciate any advice you have to offer.> > > > PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!> >>

[Guest guest]

Hi Lynn,

I am happy to share with you Brett's experience with hypotonia. Be warned –

this is long! I rarely can answer anything in a few short sentences. =)

Yes, I definitely think it is a good idea for your son to get a muscle biopsy.

There isn't a cure for Brett's disease – Central Core Myopathy, but having a

diagnosis has been helpful in deciding how to proceed with therapies, what to

expect, and just having a " name " associated with his disease. CCD is a

hereditary disease and we were able to determine it came from his father even

though he's deceased - based on some " quirks " he had along with his father (the

grandfather). This allowed his family to know the disease was in their genes

and what to look for, etc…. And we know the chances of Brett passing it on

should he choose to have kids. Of course, there are variations in the disease.

Brett's is considered severe whereas his father's was considered mild (obviously

because no one even knew he had anything wrong and he led a completely normal

active life).

I don't know if the muscle biopsy is painful. Brett had his first one at 9 days

old. He had a quadriceps biopsy and nerve biopsy. I can't say if it was

painful because he was hardly moving and on a ventilator? The results of that

biopsy came back inconclusive. On 8/8/08 he had a G-tube (feeding tube) put in

and they did another muscle biopsy this time from his stomach muscle. Again, I

don't know if it was painful because he had the biopsy during the G-tube

surgery. He was still in the NICU at this time, so they were on top of any pain

he had. His biopsies were sent to Mayo labs in Rochester. These results came

back with the positive gene for CCD.

Brett is 19 months old (adjusted age 17). Prior to the cast he sat, crawled and

cruised around the furniture (about 6 mths behind developmentally). He was

weeks away from walking and that another reason casting broke my heart. He

worked so hard to get to that point and then bam! It's like starting over… He

was a year old before he could sit up unassisted but I had to prop him up, soon

after that he kind of took off. Now with the cast he crawls a little bit and

cruises pretty well. I found a bike for him to " ride " (he actually pushes it

with his feet) and he really likes that, I'm sure because he has some mobility.

I'm so lucky and blessed regarding Brett's disposition (along with many many

other things)! He's got the best attitude and disposition and I'm not saying

that b/c I'm his mom (*smile*), I get compliments all the time even from

strangers when we are in a restaurant or public place. He's not fussy and is

pretty content most of the time. Keep in mind, he's not around other kids (my

pediatrician will not allow him at a daycare or around 2 or more kids at once

because of the respiratory risks if he gets sick) so he doesn't know or realize

he is behind which probably helps. With that said, this is all before the cast!

Now there are some moments I don't know who he is? He is extremely whiney and

fussy – for him. It's terribly frustrating because I don't know what is wrong

or how I can help. I know it has to do with the cast (obviously) but beyond

that I'm not sure of sometimes. He completely freaks out for no apparent reason

(when he was fine a minute ago) and I can't calm him down. I wonder if anyone

else has experienced this? Sorry, I digress… to answer your question, no the

hypotonia didn't make him fussy.

No, he doesn't have language yet. He babbles of course and will say " mom " , " hi "

and " up " . But that's about it. The developmental specialist I work with weekly

wants to wait until he is 2 and if he still isn't talking, he will start seeing

a speech therapist.

The other big thing Brett has encountered is swallowing issues. Does your son

have any problems with swallowing? At birth, Brett didn't have the ability to

swallow which is why he was so early b/c I had all that excess fluid in there.

For the last 2 weeks of my pregnancy I couldn't feel him move. I was in between

appts (determining what was going on with him) when I went into labor. Thank

God! He probably wouldn't have survived much longer. I digress again…. We

worked on his swallowing while he was in the NICU and were able to get him to

take a couple mL by the time we left. Slowly, with the help of a speech

therapist, he learned to swallow. He still has issues and he's probably going

to have a swallowing study done in the next month or so.

I hope some of this helps you! Does your doctor have any guess as to what it

could be? Just so you know, Brett also had blood tests and an MRI and they

showed nothing. I think you're right in doing the biopsy when he gets his next

cast!

If there is anything else I can answer or help you with, please let me know! I

don't mind sharing any of Brett's story. It's hard and I can't imagine how hard

it is not knowing the cause of the low tone!!

Good luck!

Nikki

>

>

>

> Subject: New to the group

> To: infantile_scoliosis

> Received: Wednesday, February 17, 2010, 10:51 PM

>

>

>  

>

>

>

> Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he

was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of

casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

>

> Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

>

> I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

>

> Sorry to go on so long, I just wanted to get my story out there. If anyone has

any advice on how to get through this, I would really appreciate it! Brett has

just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

>

> Thanks for reading! And I appreciate any advice you have to offer.

>

> PS - has anyone had a problem with their child's undershirt getting wet? If

so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

>

>

>

>

>

>

>

>

>

> __________________________________________________________________

> Be smarter than spam. See how smart SpamGuard is at giving junk email the boot

with the All-new Yahoo! Mail. Click on Options in Mail and switch to New Mail

today or register for free at http://mail.yahoo.ca

>

[Guest guest]

Hi Lynn,

I am happy to share with you Brett's experience with hypotonia. Be warned –

this is long! I rarely can answer anything in a few short sentences. =)

Yes, I definitely think it is a good idea for your son to get a muscle biopsy.

There isn't a cure for Brett's disease – Central Core Myopathy, but having a

diagnosis has been helpful in deciding how to proceed with therapies, what to

expect, and just having a " name " associated with his disease. CCD is a

hereditary disease and we were able to determine it came from his father even

though he's deceased - based on some " quirks " he had along with his father (the

grandfather). This allowed his family to know the disease was in their genes

and what to look for, etc…. And we know the chances of Brett passing it on

should he choose to have kids. Of course, there are variations in the disease.

Brett's is considered severe whereas his father's was considered mild (obviously

because no one even knew he had anything wrong and he led a completely normal

active life).

I don't know if the muscle biopsy is painful. Brett had his first one at 9 days

old. He had a quadriceps biopsy and nerve biopsy. I can't say if it was

painful because he was hardly moving and on a ventilator? The results of that

biopsy came back inconclusive. On 8/8/08 he had a G-tube (feeding tube) put in

and they did another muscle biopsy this time from his stomach muscle. Again, I

don't know if it was painful because he had the biopsy during the G-tube

surgery. He was still in the NICU at this time, so they were on top of any pain

he had. His biopsies were sent to Mayo labs in Rochester. These results came

back with the positive gene for CCD.

Brett is 19 months old (adjusted age 17). Prior to the cast he sat, crawled and

cruised around the furniture (about 6 mths behind developmentally). He was

weeks away from walking and that another reason casting broke my heart. He

worked so hard to get to that point and then bam! It's like starting over… He

was a year old before he could sit up unassisted but I had to prop him up, soon

after that he kind of took off. Now with the cast he crawls a little bit and

cruises pretty well. I found a bike for him to " ride " (he actually pushes it

with his feet) and he really likes that, I'm sure because he has some mobility.

I'm so lucky and blessed regarding Brett's disposition (along with many many

other things)! He's got the best attitude and disposition and I'm not saying

that b/c I'm his mom (*smile*), I get compliments all the time even from

strangers when we are in a restaurant or public place. He's not fussy and is

pretty content most of the time. Keep in mind, he's not around other kids (my

pediatrician will not allow him at a daycare or around 2 or more kids at once

because of the respiratory risks if he gets sick) so he doesn't know or realize

he is behind which probably helps. With that said, this is all before the cast!

Now there are some moments I don't know who he is? He is extremely whiney and

fussy – for him. It's terribly frustrating because I don't know what is wrong

or how I can help. I know it has to do with the cast (obviously) but beyond

that I'm not sure of sometimes. He completely freaks out for no apparent reason

(when he was fine a minute ago) and I can't calm him down. I wonder if anyone

else has experienced this? Sorry, I digress… to answer your question, no the

hypotonia didn't make him fussy.

No, he doesn't have language yet. He babbles of course and will say " mom " , " hi "

and " up " . But that's about it. The developmental specialist I work with weekly

wants to wait until he is 2 and if he still isn't talking, he will start seeing

a speech therapist.

The other big thing Brett has encountered is swallowing issues. Does your son

have any problems with swallowing? At birth, Brett didn't have the ability to

swallow which is why he was so early b/c I had all that excess fluid in there.

For the last 2 weeks of my pregnancy I couldn't feel him move. I was in between

appts (determining what was going on with him) when I went into labor. Thank

God! He probably wouldn't have survived much longer. I digress again…. We

worked on his swallowing while he was in the NICU and were able to get him to

take a couple mL by the time we left. Slowly, with the help of a speech

therapist, he learned to swallow. He still has issues and he's probably going

to have a swallowing study done in the next month or so.

I hope some of this helps you! Does your doctor have any guess as to what it

could be? Just so you know, Brett also had blood tests and an MRI and they

showed nothing. I think you're right in doing the biopsy when he gets his next

cast!

If there is anything else I can answer or help you with, please let me know! I

don't mind sharing any of Brett's story. It's hard and I can't imagine how hard

it is not knowing the cause of the low tone!!

Good luck!

Nikki

>

>

>

> Subject: New to the group

> To: infantile_scoliosis

> Received: Wednesday, February 17, 2010, 10:51 PM

>

>

>  

>

>

>

> Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he

was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of

casting Brett's right thoracic curve measured 63 degrees and his lumbar curve

measured 74. According to the doctor's notes and discussions I had with him,

Brett has Congenital Scoliosis however, I just looked at the surgery notes and

it states PIS? I have a call into the doctor. I don't know if they just made a

mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

>

> Brett has had a rough start from the get go. He was born 9 wks early,

" floppy " . After extensive tests and several muscle biopsies, it was found he has

a rare muscle disease call Central Core Myopathy - very basically put, he has

low muscle tone. He's a tough and determined little guy! He has both OT and PT

every week - along with daily home exercises. He's behind developmentally by

about 6 mths and now with the cast even more. =(

>

> I have to say, Brett is adapting to the cast remarkably well! Much, much

better than I am! I was anxious to find a group of parents whose kids had been

casted and am thrilled I finally did. At first I was extremely apprehensive

about casting b/c this is 2010, isn't there something less " archaic " than

casting a tiny child? Did anyone else have that thought/feeling? But I have

researched extensively for any alternative options and I haven't come up with

any!!

>

> Sorry to go on so long, I just wanted to get my story out there. If anyone has

any advice on how to get through this, I would really appreciate it! Brett has

just had one issue after another and I'm exhausted! I'm an only parent, my

partner - Brett's father passed away when I was 9 weeks pregnant.

>

> Thanks for reading! And I appreciate any advice you have to offer.

>

> PS - has anyone had a problem with their child's undershirt getting wet? If

so, what did you do? Grandma watched Brett today and she didn't know how to

" properly " diaper him so I had a mess tonight to deal with!

>

>

>

>

>

>

>

>

>

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[Guest guest]

Nikki

In Yahoo mail go to options, mail options and then click on signature and you can put anything there that you would like on all your emails.

Keep us updated on the rash. I hope today it is better. Airing out helped us in the past. Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Fri, February 19, 2010 11:25:15 PMSubject: Re: New to the group

Hi Joan,Unfortunately I only have help one day of the week. I'm working on trying to get more. Thanks, I will try the desitin! I called Shriners and they said to watch it for a couple days and if it doesn't get better to call them again. So we'll see, I'm sure it will be fine! =)NikkiPS - how did you get your signature on the posts? > > >> > > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much with your baby and on top of it, lost your husband. I can't imagine the strength you must have. We are here to help you and support you. We all know what you are going through and have been in your shoes when it comes to casting your child. I TOO thought that casting sounded a little barbaric, but quite the opposite, it is gentle and slow.

Your child will really adjust very quickly. Kids are so resilient. You will get into a routine of diapering and bathing and it will be everyday life for you and him. When my son wets on the undershirt, we pull it down as far as we can and clean it with Cetafil soap and warm water then blow dry the shirt on cool (don't want to burn the baby). I learned this from the ladies on this group. They are all so helpful and wonderful. Ask any questions and please turn> to us for support> > > > > > > > >  Joan> > > mom to Hayden 3> > > 43 degrees down from 62> > > Cast number 3> > > Treated at ish Rite Hospital > > > Dallas, TX > > > > > > > > > >

> > > > > ____________ _________ _________ __> > > From: nikki062508 <nikkineary@ ...>> > > To: infantile_scoliosis @yahoogroups. com> > > Sent: Thu, February 18, 2010 12:51:35 AM> > > Subject: [infantile_scoliosi s] New to the group> > > > > >  > > > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)> > >

> > > Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(> > > > > > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!> >

> > > > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant. > > > > > > Thanks for reading! And I appreciate any advice you have to offer.> > > > > > PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!> > >> >>

[Guest guest]

Nikki

In Yahoo mail go to options, mail options and then click on signature and you can put anything there that you would like on all your emails.

Keep us updated on the rash. I hope today it is better. Airing out helped us in the past. Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Fri, February 19, 2010 11:25:15 PMSubject: Re: New to the group

Hi Joan,Unfortunately I only have help one day of the week. I'm working on trying to get more. Thanks, I will try the desitin! I called Shriners and they said to watch it for a couple days and if it doesn't get better to call them again. So we'll see, I'm sure it will be fine! =)NikkiPS - how did you get your signature on the posts? > > >> > > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much with your baby and on top of it, lost your husband. I can't imagine the strength you must have. We are here to help you and support you. We all know what you are going through and have been in your shoes when it comes to casting your child. I TOO thought that casting sounded a little barbaric, but quite the opposite, it is gentle and slow.

Your child will really adjust very quickly. Kids are so resilient. You will get into a routine of diapering and bathing and it will be everyday life for you and him. When my son wets on the undershirt, we pull it down as far as we can and clean it with Cetafil soap and warm water then blow dry the shirt on cool (don't want to burn the baby). I learned this from the ladies on this group. They are all so helpful and wonderful. Ask any questions and please turn> to us for support> > > > > > > > >  Joan> > > mom to Hayden 3> > > 43 degrees down from 62> > > Cast number 3> > > Treated at ish Rite Hospital > > > Dallas, TX > > > > > > > > > >

> > > > > ____________ _________ _________ __> > > From: nikki062508 <nikkineary@ ...>> > > To: infantile_scoliosis @yahoogroups. com> > > Sent: Thu, February 18, 2010 12:51:35 AM> > > Subject: [infantile_scoliosi s] New to the group> > > > > >  > > > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)> > >

> > > Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(> > > > > > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!> >

> > > > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant. > > > > > > Thanks for reading! And I appreciate any advice you have to offer.> > > > > > PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!> > >> >>

[Guest guest]

Hi Nikki!The Cetaphil says "gentle cleanser" on the bottle. Many drugstores have a generic version right near it in the skin/facial cleanser aisle that has identical ingredients. That works, too, and costs less. The Cetaphil is really good for spot cleaning the under sweater- if there is a small food spill/poo spot, etc...it seems to really take out the smell.You can also put a bit on an unscented baby wipe to remove a spill/splash on the outside of the cast or on the medical tape/moleskin.We need 2 people to wash the sweater for a big pee leak. One of us holds our son while the other parent pulls the sweater out and down as far as possible, then we put Cetaphil and Burt's Bees baby wash mixed together on it, rub it all in, wring it out over a small plastic trash container, then

rinse with a glass of water a few times, towel dry as best you can...then blow dry by keeping it pulled out and protecting his skin with a towel.It's hard, but it really keeps the smell at bay. Our son used to cry through it, but he's mostly used to it, now. Just do your best!Welcome : ) Heidi, Bexon's Mama, (2 years 7 mos. old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25)To: infantile_scoliosis Sent: Fri, February 19, 2010 12:09:24 AMSubject: Re: New to the group

Thanks Joan! It's been a tough road but we're getting through it. I'm already enjoying reading all the posts! It's hard when all your friends and family have children without issues - I haven't had anyone to really talk to about Brett's problems. That's been extremely hard and isolating. My spirits have already been lifted by reading just a handful of posts!!

Last night, I tried cleaning his undershirt with a washcloth with a little soap on it, then blow dried it the best I could. It was drenched!!!! ! The blow dryer was really upsetting Brett and on top of that he was super tired. I was so frustrated I couldn't hardly focus so I ended up letting him go to bed. Side note - everytime he comes home from his Grandma's house, something is "wrong" despite my instructions and pleas to follow them. Anyway, this morning I tried cleaning it with his baby soap and febreeze. =) I went to buy the Cetaphil tonight but could only find facial cleanser, have you tried that?

Thanks again!

Nikki

>

> Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much with your baby and on top of it, lost your husband. I can't imagine the strength you must have. We are here to help you and support you. We all know what you are going through and have been in your shoes when it comes to casting your child. I TOO thought that casting sounded a little barbaric, but quite the opposite, it is gentle and slow. Your child will really adjust very quickly. Kids are so resilient. You will get into a routine of diapering and bathing and it will be everyday life for you and him. When my son wets on the undershirt, we pull it down as far as we can and clean it with Cetafil soap and warm water then blow dry the shirt on cool (don't want to burn the baby). I learned this from the ladies on this group. They are all so helpful and wonderful. Ask any questions and please turn to us for

support

>

>

> Â Joan

> mom to Hayden 3

> 43 degrees down from 62

> Cast number 3

> Treated at ish Rite Hospital

> Dallas, TX

>

>

>

>

> ____________ _________ _________ __

> From: nikki062508 <nikkineary@ ...>

> To: infantile_scoliosis @yahoogroups. com

> Sent: Thu, February 18, 2010 12:51:35 AM

> Subject: [infantile_scoliosi s] New to the group

>

> Â

> Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

>

> Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(

>

> I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!

>

> Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant.

>

> Thanks for reading! And I appreciate any advice you have to offer.

>

> PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!

>

[Guest guest]

Maybe start with your regular diaper rash cream on the lower parts- up near the cast Aquaphor might be better, or the calendua baby cream by Weleda Baby...the Cetaphil- forgot to mention this- is very good as a last wipe following a poopy diaper...very gentle on the skin. Heidi, Bexon's MamaTo:

infantile_scoliosis Sent: Fri, February 19, 2010 2:18:46 PMSubject: Re: New to the group

I know! I've had so many talks with her regarding other issues and she will do good for a little while and then start to do as she pleases again! I haven't talked to her since I picked him up and saw how wet he was, I'm so frustrated (with her) I'm afraid I will say something I shouldn't so I've been deliberately avoiding her. BTW she is the paternal grandma, my mom does what I ask, thankfully - I couldn't handle 2 of them. =) I'm going to try the Cetaphil a little later today however, this morning he broke out with a pretty substantial rash. It is under the cast on his lower belly down to his privates and a little on his legs/hips. Any suggestions? I don't know what to do??? I'm going to try to read through here and see if I can find something but I don't have a lot of free time left....

Thanks!!!!

> >

> > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much with your baby and on top of it, lost your husband. I can't imagine the strength you must have. We are here to help you and support you. We all know what you are going through and have been in your shoes when it comes to casting your child. I TOO thought that casting sounded a little barbaric, but quite the opposite, it is gentle and slow. Your child will really adjust very quickly. Kids are so resilient. You will get into a routine of diapering and bathing and it will be everyday life for you and him. When my son wets on the undershirt, we pull it down as far as we can and clean it with Cetafil soap and warm water then blow dry the shirt on cool (don't want to burn the baby). I learned this from the ladies on this group. They are all so helpful and

wonderful. Ask any questions and please turn to us for support

> >

> >

> >  Joan

> > mom to Hayden 3

> > 43 degrees down from 62

> > Cast number 3

> > Treated at ish Rite Hospital

> > Dallas, TX

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: nikki062508 <nikkineary@ ...>

> > To: infantile_scoliosis @yahoogroups. com

> > Sent: Thu, February 18, 2010 12:51:35 AM

> > Subject: [infantile_scoliosi s] New to the group

> >

> > ÂÂ

> > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> >

> > Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(

> >

> > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!

> >

> > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant.

> >

> > Thanks for reading! And I appreciate any advice you have to offer.

> >

> > PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!

> >

>

[Guest guest]

Maybe start with your regular diaper rash cream on the lower parts- up near the cast Aquaphor might be better, or the calendua baby cream by Weleda Baby...the Cetaphil- forgot to mention this- is very good as a last wipe following a poopy diaper...very gentle on the skin. Heidi, Bexon's MamaTo:

infantile_scoliosis Sent: Fri, February 19, 2010 2:18:46 PMSubject: Re: New to the group

I know! I've had so many talks with her regarding other issues and she will do good for a little while and then start to do as she pleases again! I haven't talked to her since I picked him up and saw how wet he was, I'm so frustrated (with her) I'm afraid I will say something I shouldn't so I've been deliberately avoiding her. BTW she is the paternal grandma, my mom does what I ask, thankfully - I couldn't handle 2 of them. =) I'm going to try the Cetaphil a little later today however, this morning he broke out with a pretty substantial rash. It is under the cast on his lower belly down to his privates and a little on his legs/hips. Any suggestions? I don't know what to do??? I'm going to try to read through here and see if I can find something but I don't have a lot of free time left....

Thanks!!!!

> >

> > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much with your baby and on top of it, lost your husband. I can't imagine the strength you must have. We are here to help you and support you. We all know what you are going through and have been in your shoes when it comes to casting your child. I TOO thought that casting sounded a little barbaric, but quite the opposite, it is gentle and slow. Your child will really adjust very quickly. Kids are so resilient. You will get into a routine of diapering and bathing and it will be everyday life for you and him. When my son wets on the undershirt, we pull it down as far as we can and clean it with Cetafil soap and warm water then blow dry the shirt on cool (don't want to burn the baby). I learned this from the ladies on this group. They are all so helpful and

wonderful. Ask any questions and please turn to us for support

> >

> >

> >  Joan

> > mom to Hayden 3

> > 43 degrees down from 62

> > Cast number 3

> > Treated at ish Rite Hospital

> > Dallas, TX

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: nikki062508 <nikkineary@ ...>

> > To: infantile_scoliosis @yahoogroups. com

> > Sent: Thu, February 18, 2010 12:51:35 AM

> > Subject: [infantile_scoliosi s] New to the group

> >

> > ÂÂ

> > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> >

> > Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(

> >

> > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!

> >

> > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant.

> >

> > Thanks for reading! And I appreciate any advice you have to offer.

> >

> > PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!

> >

>

[Guest guest]

Maybe start with your regular diaper rash cream on the lower parts- up near the cast Aquaphor might be better, or the calendua baby cream by Weleda Baby...the Cetaphil- forgot to mention this- is very good as a last wipe following a poopy diaper...very gentle on the skin. Heidi, Bexon's MamaTo:

infantile_scoliosis Sent: Fri, February 19, 2010 2:18:46 PMSubject: Re: New to the group

I know! I've had so many talks with her regarding other issues and she will do good for a little while and then start to do as she pleases again! I haven't talked to her since I picked him up and saw how wet he was, I'm so frustrated (with her) I'm afraid I will say something I shouldn't so I've been deliberately avoiding her. BTW she is the paternal grandma, my mom does what I ask, thankfully - I couldn't handle 2 of them. =) I'm going to try the Cetaphil a little later today however, this morning he broke out with a pretty substantial rash. It is under the cast on his lower belly down to his privates and a little on his legs/hips. Any suggestions? I don't know what to do??? I'm going to try to read through here and see if I can find something but I don't have a lot of free time left....

Thanks!!!!

> >

> > Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much with your baby and on top of it, lost your husband. I can't imagine the strength you must have. We are here to help you and support you. We all know what you are going through and have been in your shoes when it comes to casting your child. I TOO thought that casting sounded a little barbaric, but quite the opposite, it is gentle and slow. Your child will really adjust very quickly. Kids are so resilient. You will get into a routine of diapering and bathing and it will be everyday life for you and him. When my son wets on the undershirt, we pull it down as far as we can and clean it with Cetafil soap and warm water then blow dry the shirt on cool (don't want to burn the baby). I learned this from the ladies on this group. They are all so helpful and

wonderful. Ask any questions and please turn to us for support

> >

> >

> >  Joan

> > mom to Hayden 3

> > 43 degrees down from 62

> > Cast number 3

> > Treated at ish Rite Hospital

> > Dallas, TX

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: nikki062508 <nikkineary@ ...>

> > To: infantile_scoliosis @yahoogroups. com

> > Sent: Thu, February 18, 2010 12:51:35 AM

> > Subject: [infantile_scoliosi s] New to the group

> >

> > ÂÂ

> > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> >

> > Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(

> >

> > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!

> >

> > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant.

> >

> > Thanks for reading! And I appreciate any advice you have to offer.

> >

> > PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!

> >

>

[Guest guest]

Nikki,I just wanted to say welcome to the group! There are so many people on here that are willing to help you in any way that we can. My daughter has been is a cast since July 2009 and is her normal self except for not being able to take baths and swim. I never thought about the cast being archaic... maybe I would have if she hadn't adapted so easily? Just know that everyday will get easier and this is the only thing out there that can save your child. Bracing doesn't help with curves that high as I learned the hard way! If I can help you in any way, let me know, I'd be happy to help or talk on the phone with you! Best of luck! Patty, mom of Isabella, 2 years old, in 4th cast (Rochester)

& mom to & EvanTo: infantile_scoliosis Sent: Thu, February 18, 2010 1:51:35 AMSubject: New to the group

Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(

I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!

Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant.

Thanks for reading! And I appreciate any advice you have to offer.

PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!

[Guest guest]

Nikki,I just wanted to say welcome to the group! There are so many people on here that are willing to help you in any way that we can. My daughter has been is a cast since July 2009 and is her normal self except for not being able to take baths and swim. I never thought about the cast being archaic... maybe I would have if she hadn't adapted so easily? Just know that everyday will get easier and this is the only thing out there that can save your child. Bracing doesn't help with curves that high as I learned the hard way! If I can help you in any way, let me know, I'd be happy to help or talk on the phone with you! Best of luck! Patty, mom of Isabella, 2 years old, in 4th cast (Rochester)

& mom to & EvanTo: infantile_scoliosis Sent: Thu, February 18, 2010 1:51:35 AMSubject: New to the group

Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(

I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!

Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant.

Thanks for reading! And I appreciate any advice you have to offer.

PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!

[Guest guest]

Nikki,

 

Something jumped out at me as I was reading your post just now. It reminded me of something when Todd was in a cast...  Brett sounds like such a special little soul!  I wonder about the sudden fussiness you mentioned.  We did experience some of that with Todd's first cast. 

 

He was a different child.  We were wondering how we would make it through the casting process.  It was so very hard to see him that way, but everyone said he'd adapt faster than we would, and that he'd be back to normal soon, and we just weren't seeing how that would be possible!  

 

It turns out, there was an enormous pressure sore on his hip and the cast needed some major trimming.  Once that was addressed, he truly did adapt quickly and we had our little boy back.  Do you think there is a chance that something could be painful for Brett?  maybe something from the dampness, if nothing from the cast itself? 

 

Poor little guy, and poor mama, too!  It's so hard when they are unhappy or hurting, especially when they can't tell you what's going on!  I wish you and little Brett the best of luck.

 

, Mommy to Todd

 

Hi Lynn,I am happy to share with you Brett's experience with hypotonia. Be warned – this is long! I rarely can answer anything in a few short sentences. =)Yes, I definitely think it is a good idea for your son to get a muscle biopsy. There isn't a cure for Brett's disease – Central Core Myopathy, but having a diagnosis has been helpful in deciding how to proceed with therapies, what to expect, and just having a " name " associated with his disease. CCD is a hereditary disease and we were able to determine it came from his father even though he's deceased - based on some " quirks " he had along with his father (the grandfather). This allowed his family to know the disease was in their genes and what to look for, etc…. And we know the chances of Brett passing it on should he choose to have kids. Of course, there are variations in the disease. Brett's is considered severe whereas his father's was considered mild (obviously because no one even knew he had anything wrong and he led a completely normal active life).

I don't know if the muscle biopsy is painful. Brett had his first one at 9 days old. He had a quadriceps biopsy and nerve biopsy. I can't say if it was painful because he was hardly moving and on a ventilator? The results of that biopsy came back inconclusive. On 8/8/08 he had a G-tube (feeding tube) put in and they did another muscle biopsy this time from his stomach muscle. Again, I don't know if it was painful because he had the biopsy during the G-tube surgery. He was still in the NICU at this time, so they were on top of any pain he had. His biopsies were sent to Mayo labs in Rochester. These results came back with the positive gene for CCD.

Brett is 19 months old (adjusted age 17). Prior to the cast he sat, crawled and cruised around the furniture (about 6 mths behind developmentally). He was weeks away from walking and that another reason casting broke my heart. He worked so hard to get to that point and then bam! It's like starting over… He was a year old before he could sit up unassisted but I had to prop him up, soon after that he kind of took off. Now with the cast he crawls a little bit and cruises pretty well. I found a bike for him to " ride " (he actually pushes it with his feet) and he really likes that, I'm sure because he has some mobility.

I'm so lucky and blessed regarding Brett's disposition (along with many many other things)! He's got the best attitude and disposition and I'm not saying that b/c I'm his mom (*smile*), I get compliments all the time even from strangers when we are in a restaurant or public place. He's not fussy and is pretty content most of the time. Keep in mind, he's not around other kids (my pediatrician will not allow him at a daycare or around 2 or more kids at once because of the respiratory risks if he gets sick) so he doesn't know or realize he is behind which probably helps. With that said, this is all before the cast! Now there are some moments I don't know who he is? He is extremely whiney and fussy – for him. It's terribly frustrating because I don't know what is wrong or how I can help. I know it has to do with the cast (obviously) but beyond that I'm not sure of sometimes. He completely freaks out for no apparent reason (when he was fine a minute ago) and I can't calm him down. I wonder if anyone else has experienced this? Sorry, I digress… to answer your question, no the hypotonia didn't make him fussy.

No, he doesn't have language yet. He babbles of course and will say " mom " , " hi " and " up " . But that's about it. The developmental specialist I work with weekly wants to wait until he is 2 and if he still isn't talking, he will start seeing a speech therapist.

The other big thing Brett has encountered is swallowing issues. Does your son have any problems with swallowing? At birth, Brett didn't have the ability to swallow which is why he was so early b/c I had all that excess fluid in there. For the last 2 weeks of my pregnancy I couldn't feel him move. I was in between appts (determining what was going on with him) when I went into labor. Thank God! He probably wouldn't have survived much longer. I digress again…. We worked on his swallowing while he was in the NICU and were able to get him to take a couple mL by the time we left. Slowly, with the help of a speech therapist, he learned to swallow. He still has issues and he's probably going to have a swallowing study done in the next month or so.

I hope some of this helps you! Does your doctor have any guess as to what it could be? Just so you know, Brett also had blood tests and an MRI and they showed nothing. I think you're right in doing the biopsy when he gets his next cast!

If there is anything else I can answer or help you with, please let me know! I don't mind sharing any of Brett's story. It's hard and I can't imagine how hard it is not knowing the cause of the low tone!!

Good luck!Nikki> > > > Subject: New to the group > To: infantile_scoliosis > Received: Wednesday, February 17, 2010, 10:51 PM> >

>   > > > > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> > Brett has had a rough start from the get go. He was born 9 wks early, " floppy " . After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(

> > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less " archaic " than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!

> > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant.

> > Thanks for reading! And I appreciate any advice you have to offer.> > PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to " properly " diaper him so I had a mess tonight to deal with!

> > > > > > > > > > __________________________________________________________> Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail. Click on Options in Mail and switch to New Mail today or register for free at http://mail.yahoo.ca

>

[Guest guest]

Nikki,

 

Something jumped out at me as I was reading your post just now. It reminded me of something when Todd was in a cast...  Brett sounds like such a special little soul!  I wonder about the sudden fussiness you mentioned.  We did experience some of that with Todd's first cast. 

 

He was a different child.  We were wondering how we would make it through the casting process.  It was so very hard to see him that way, but everyone said he'd adapt faster than we would, and that he'd be back to normal soon, and we just weren't seeing how that would be possible!  

 

It turns out, there was an enormous pressure sore on his hip and the cast needed some major trimming.  Once that was addressed, he truly did adapt quickly and we had our little boy back.  Do you think there is a chance that something could be painful for Brett?  maybe something from the dampness, if nothing from the cast itself? 

 

Poor little guy, and poor mama, too!  It's so hard when they are unhappy or hurting, especially when they can't tell you what's going on!  I wish you and little Brett the best of luck.

 

, Mommy to Todd

 

Hi Lynn,I am happy to share with you Brett's experience with hypotonia. Be warned – this is long! I rarely can answer anything in a few short sentences. =)Yes, I definitely think it is a good idea for your son to get a muscle biopsy. There isn't a cure for Brett's disease – Central Core Myopathy, but having a diagnosis has been helpful in deciding how to proceed with therapies, what to expect, and just having a " name " associated with his disease. CCD is a hereditary disease and we were able to determine it came from his father even though he's deceased - based on some " quirks " he had along with his father (the grandfather). This allowed his family to know the disease was in their genes and what to look for, etc…. And we know the chances of Brett passing it on should he choose to have kids. Of course, there are variations in the disease. Brett's is considered severe whereas his father's was considered mild (obviously because no one even knew he had anything wrong and he led a completely normal active life).

I don't know if the muscle biopsy is painful. Brett had his first one at 9 days old. He had a quadriceps biopsy and nerve biopsy. I can't say if it was painful because he was hardly moving and on a ventilator? The results of that biopsy came back inconclusive. On 8/8/08 he had a G-tube (feeding tube) put in and they did another muscle biopsy this time from his stomach muscle. Again, I don't know if it was painful because he had the biopsy during the G-tube surgery. He was still in the NICU at this time, so they were on top of any pain he had. His biopsies were sent to Mayo labs in Rochester. These results came back with the positive gene for CCD.

Brett is 19 months old (adjusted age 17). Prior to the cast he sat, crawled and cruised around the furniture (about 6 mths behind developmentally). He was weeks away from walking and that another reason casting broke my heart. He worked so hard to get to that point and then bam! It's like starting over… He was a year old before he could sit up unassisted but I had to prop him up, soon after that he kind of took off. Now with the cast he crawls a little bit and cruises pretty well. I found a bike for him to " ride " (he actually pushes it with his feet) and he really likes that, I'm sure because he has some mobility.

I'm so lucky and blessed regarding Brett's disposition (along with many many other things)! He's got the best attitude and disposition and I'm not saying that b/c I'm his mom (*smile*), I get compliments all the time even from strangers when we are in a restaurant or public place. He's not fussy and is pretty content most of the time. Keep in mind, he's not around other kids (my pediatrician will not allow him at a daycare or around 2 or more kids at once because of the respiratory risks if he gets sick) so he doesn't know or realize he is behind which probably helps. With that said, this is all before the cast! Now there are some moments I don't know who he is? He is extremely whiney and fussy – for him. It's terribly frustrating because I don't know what is wrong or how I can help. I know it has to do with the cast (obviously) but beyond that I'm not sure of sometimes. He completely freaks out for no apparent reason (when he was fine a minute ago) and I can't calm him down. I wonder if anyone else has experienced this? Sorry, I digress… to answer your question, no the hypotonia didn't make him fussy.

No, he doesn't have language yet. He babbles of course and will say " mom " , " hi " and " up " . But that's about it. The developmental specialist I work with weekly wants to wait until he is 2 and if he still isn't talking, he will start seeing a speech therapist.

The other big thing Brett has encountered is swallowing issues. Does your son have any problems with swallowing? At birth, Brett didn't have the ability to swallow which is why he was so early b/c I had all that excess fluid in there. For the last 2 weeks of my pregnancy I couldn't feel him move. I was in between appts (determining what was going on with him) when I went into labor. Thank God! He probably wouldn't have survived much longer. I digress again…. We worked on his swallowing while he was in the NICU and were able to get him to take a couple mL by the time we left. Slowly, with the help of a speech therapist, he learned to swallow. He still has issues and he's probably going to have a swallowing study done in the next month or so.

I hope some of this helps you! Does your doctor have any guess as to what it could be? Just so you know, Brett also had blood tests and an MRI and they showed nothing. I think you're right in doing the biopsy when he gets his next cast!

If there is anything else I can answer or help you with, please let me know! I don't mind sharing any of Brett's story. It's hard and I can't imagine how hard it is not knowing the cause of the low tone!!

Good luck!Nikki> > > > Subject: New to the group > To: infantile_scoliosis > Received: Wednesday, February 17, 2010, 10:51 PM> >

>   > > > > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> > Brett has had a rough start from the get go. He was born 9 wks early, " floppy " . After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(

> > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less " archaic " than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!

> > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant.

> > Thanks for reading! And I appreciate any advice you have to offer.> > PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to " properly " diaper him so I had a mess tonight to deal with!

> > > > > > > > > > __________________________________________________________> Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail. Click on Options in Mail and switch to New Mail today or register for free at http://mail.yahoo.ca

>

[Guest guest]

Nikki,

 

Something jumped out at me as I was reading your post just now. It reminded me of something when Todd was in a cast...  Brett sounds like such a special little soul!  I wonder about the sudden fussiness you mentioned.  We did experience some of that with Todd's first cast. 

 

He was a different child.  We were wondering how we would make it through the casting process.  It was so very hard to see him that way, but everyone said he'd adapt faster than we would, and that he'd be back to normal soon, and we just weren't seeing how that would be possible!  

 

It turns out, there was an enormous pressure sore on his hip and the cast needed some major trimming.  Once that was addressed, he truly did adapt quickly and we had our little boy back.  Do you think there is a chance that something could be painful for Brett?  maybe something from the dampness, if nothing from the cast itself? 

 

Poor little guy, and poor mama, too!  It's so hard when they are unhappy or hurting, especially when they can't tell you what's going on!  I wish you and little Brett the best of luck.

 

, Mommy to Todd

 

Hi Lynn,I am happy to share with you Brett's experience with hypotonia. Be warned – this is long! I rarely can answer anything in a few short sentences. =)Yes, I definitely think it is a good idea for your son to get a muscle biopsy. There isn't a cure for Brett's disease – Central Core Myopathy, but having a diagnosis has been helpful in deciding how to proceed with therapies, what to expect, and just having a " name " associated with his disease. CCD is a hereditary disease and we were able to determine it came from his father even though he's deceased - based on some " quirks " he had along with his father (the grandfather). This allowed his family to know the disease was in their genes and what to look for, etc…. And we know the chances of Brett passing it on should he choose to have kids. Of course, there are variations in the disease. Brett's is considered severe whereas his father's was considered mild (obviously because no one even knew he had anything wrong and he led a completely normal active life).

I don't know if the muscle biopsy is painful. Brett had his first one at 9 days old. He had a quadriceps biopsy and nerve biopsy. I can't say if it was painful because he was hardly moving and on a ventilator? The results of that biopsy came back inconclusive. On 8/8/08 he had a G-tube (feeding tube) put in and they did another muscle biopsy this time from his stomach muscle. Again, I don't know if it was painful because he had the biopsy during the G-tube surgery. He was still in the NICU at this time, so they were on top of any pain he had. His biopsies were sent to Mayo labs in Rochester. These results came back with the positive gene for CCD.

Brett is 19 months old (adjusted age 17). Prior to the cast he sat, crawled and cruised around the furniture (about 6 mths behind developmentally). He was weeks away from walking and that another reason casting broke my heart. He worked so hard to get to that point and then bam! It's like starting over… He was a year old before he could sit up unassisted but I had to prop him up, soon after that he kind of took off. Now with the cast he crawls a little bit and cruises pretty well. I found a bike for him to " ride " (he actually pushes it with his feet) and he really likes that, I'm sure because he has some mobility.

I'm so lucky and blessed regarding Brett's disposition (along with many many other things)! He's got the best attitude and disposition and I'm not saying that b/c I'm his mom (*smile*), I get compliments all the time even from strangers when we are in a restaurant or public place. He's not fussy and is pretty content most of the time. Keep in mind, he's not around other kids (my pediatrician will not allow him at a daycare or around 2 or more kids at once because of the respiratory risks if he gets sick) so he doesn't know or realize he is behind which probably helps. With that said, this is all before the cast! Now there are some moments I don't know who he is? He is extremely whiney and fussy – for him. It's terribly frustrating because I don't know what is wrong or how I can help. I know it has to do with the cast (obviously) but beyond that I'm not sure of sometimes. He completely freaks out for no apparent reason (when he was fine a minute ago) and I can't calm him down. I wonder if anyone else has experienced this? Sorry, I digress… to answer your question, no the hypotonia didn't make him fussy.

No, he doesn't have language yet. He babbles of course and will say " mom " , " hi " and " up " . But that's about it. The developmental specialist I work with weekly wants to wait until he is 2 and if he still isn't talking, he will start seeing a speech therapist.

The other big thing Brett has encountered is swallowing issues. Does your son have any problems with swallowing? At birth, Brett didn't have the ability to swallow which is why he was so early b/c I had all that excess fluid in there. For the last 2 weeks of my pregnancy I couldn't feel him move. I was in between appts (determining what was going on with him) when I went into labor. Thank God! He probably wouldn't have survived much longer. I digress again…. We worked on his swallowing while he was in the NICU and were able to get him to take a couple mL by the time we left. Slowly, with the help of a speech therapist, he learned to swallow. He still has issues and he's probably going to have a swallowing study done in the next month or so.

I hope some of this helps you! Does your doctor have any guess as to what it could be? Just so you know, Brett also had blood tests and an MRI and they showed nothing. I think you're right in doing the biopsy when he gets his next cast!

If there is anything else I can answer or help you with, please let me know! I don't mind sharing any of Brett's story. It's hard and I can't imagine how hard it is not knowing the cause of the low tone!!

Good luck!Nikki> > > > Subject: New to the group > To: infantile_scoliosis > Received: Wednesday, February 17, 2010, 10:51 PM> >

>   > > > > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)

> > Brett has had a rough start from the get go. He was born 9 wks early, " floppy " . After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(

> > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less " archaic " than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!

> > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant.

> > Thanks for reading! And I appreciate any advice you have to offer.> > PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to " properly " diaper him so I had a mess tonight to deal with!

> > > > > > > > > > __________________________________________________________> Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail. Click on Options in Mail and switch to New Mail today or register for free at http://mail.yahoo.ca

>

[Guest guest]

Thanks ! I have looked all around his cast and haven't found anything. But maybe when he bends or in a particular position, it pinches? He goes to his pediatrician Monday and I'm going to have him take a look. I don't know if maybe because of his age, he's starting to enter that terrible 2 stage?? And maybe it's a coincidence? I don't know??????? *sigh*

Nikki Mother of Brett (20 mths) 1st cast

To: infantile_scoliosis Sent: Sat, February 20, 2010 9:57:35 PMSubject: Re: Re: New to the group

Nikki,

Something jumped out at me as I was reading your post just now. It reminded me of something when Todd was in a cast... Brett sounds like such a special little soul! I wonder about the sudden fussiness you mentioned. We did experience some of that with Todd's first cast.

He was a different child. We were wondering how we would make it through the casting process. It was so very hard to see him that way, but everyone said he'd adapt faster than we would, and that he'd be back to normal soon, and we just weren't seeing how that would be possible!

It turns out, there was an enormous pressure sore on his hip and the cast needed some major trimming. Once that was addressed, he truly did adapt quickly and we had our little boy back. Do you think there is a chance that something could be painful for Brett? maybe something from the dampness, if nothing from the cast itself?

Poor little guy, and poor mama, too! It's so hard when they are unhappy or hurting, especially when they can't tell you what's going on! I wish you and little Brett the best of luck.

, Mommy to Todd

On Sat, Feb 20, 2010 at 12:21 AM, nikki062508 <nikkinearyyahoo (DOT) com> wrote:

Hi Lynn,I am happy to share with you Brett's experience with hypotonia. Be warned – this is long! I rarely can answer anything in a few short sentences. =)Yes, I definitely think it is a good idea for your son to get a muscle biopsy. There isn't a cure for Brett's disease – Central Core Myopathy, but having a diagnosis has been helpful in deciding how to proceed with therapies, what to expect, and just having a "name" associated with his disease. CCD is a hereditary disease and we were able to determine it came from his father even though he's deceased - based on some "quirks" he had along with his father (the grandfather) . This allowed his family to know the disease was in their genes and what to look for, etc…. And we know the chances of Brett passing it on should he choose to have kids. Of course, there are variations in the disease. Brett's is considered severe whereas his father's was considered mild (obviously because no

one even knew he had anything wrong and he led a completely normal active life). I don't know if the muscle biopsy is painful. Brett had his first one at 9 days old. He had a quadriceps biopsy and nerve biopsy. I can't say if it was painful because he was hardly moving and on a ventilator? The results of that biopsy came back inconclusive. On 8/8/08 he had a G-tube (feeding tube) put in and they did another muscle biopsy this time from his stomach muscle. Again, I don't know if it was painful because he had the biopsy during the G-tube surgery. He was still in the NICU at this time, so they were on top of any pain he had. His biopsies were sent to Mayo labs in Rochester. These results came back with the positive gene for CCD. Brett is 19 months old (adjusted age 17). Prior to the cast he sat, crawled and cruised around the furniture (about 6 mths behind developmentally) . He was weeks away from walking and that another reason casting

broke my heart. He worked so hard to get to that point and then bam! It's like starting over… He was a year old before he could sit up unassisted but I had to prop him up, soon after that he kind of took off. Now with the cast he crawls a little bit and cruises pretty well. I found a bike for him to "ride" (he actually pushes it with his feet) and he really likes that, I'm sure because he has some mobility.I'm so lucky and blessed regarding Brett's disposition (along with many many other things)! He's got the best attitude and disposition and I'm not saying that b/c I'm his mom (*smile*), I get compliments all the time even from strangers when we are in a restaurant or public place. He's not fussy and is pretty content most of the time. Keep in mind, he's not around other kids (my pediatrician will not allow him at a daycare or around 2 or more kids at once because of the respiratory risks if he gets sick) so he doesn't know or realize he is

behind which probably helps. With that said, this is all before the cast! Now there are some moments I don't know who he is? He is extremely whiney and fussy – for him. It's terribly frustrating because I don't know what is wrong or how I can help. I know it has to do with the cast (obviously) but beyond that I'm not sure of sometimes. He completely freaks out for no apparent reason (when he was fine a minute ago) and I can't calm him down. I wonder if anyone else has experienced this? Sorry, I digress… to answer your question, no the hypotonia didn't make him fussy.No, he doesn't have language yet. He babbles of course and will say "mom", "hi" and "up". But that's about it. The developmental specialist I work with weekly wants to wait until he is 2 and if he still isn't talking, he will start seeing a speech therapist.The other big thing Brett has encountered is swallowing issues. Does your son have any problems with swallowing? At

birth, Brett didn't have the ability to swallow which is why he was so early b/c I had all that excess fluid in there. For the last 2 weeks of my pregnancy I couldn't feel him move. I was in between appts (determining what was going on with him) when I went into labor. Thank God! He probably wouldn't have survived much longer. I digress again…. We worked on his swallowing while he was in the NICU and were able to get him to take a couple mL by the time we left. Slowly, with the help of a speech therapist, he learned to swallow. He still has issues and he's probably going to have a swallowing study done in the next month or so. I hope some of this helps you! Does your doctor have any guess as to what it could be? Just so you know, Brett also had blood tests and an MRI and they showed nothing. I think you're right in doing the biopsy when he gets his next cast!If there is anything else I can answer or help you with, please let me know! I

don't mind sharing any of Brett's story. It's hard and I can't imagine how hard it is not knowing the cause of the low tone!!Good luck!Nikki> > > From: nikki062508 <nikkineary@. ..>> Subject: [infantile_scoliosi s] New to the group > To: infantile_scoliosis @yahoogroups. com> Received: Wednesday, February 17, 2010, 10:51 PM> > > Â > > > > Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)> > Brett has had a rough start from the get go. He was born 9

wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now with the cast even more. =(> > I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!> > Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how

to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant. > > Thanks for reading! And I appreciate any advice you have to offer.> > PS - has anyone had a problem with their child's undershirt getting wet? If so, what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!> > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail. Click on Options in Mail and switch to New Mail today or register for free at http://mail. yahoo.ca>