Re: (unknown)

[Guest guest]

Thanks Heidi, that makes me feel better! Speaking of barely noticing it, I need to get Isabella some clothes for summer and I don't know what size to get her if she's going to be casted.  How bulky is the cast?PattyTo: infantile_scoliosis Sent: Wednesday, May 27, 2009 11:17:42

AMSubject: Re: (unknown)

Hi Patty, I saw the video after our son was cast, and it scared me, too! I was glad I didn't see it before, but they cut all of that mummy looking stuff away, and you can see the cute kids in their casts next to their stories on the site. It looks like a plaster vest and you can barely notice it under a t-shirt.

 

The number for ISOP and Hyatt is:

 

or toll free:

 

Her email is @infantilesc oliosis.org

 

-Heidi 

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Tuesday, May 26, 2009, 6:03 PM

Hello, my name is Patty and I am new to all of this.  My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early  April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her.  I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either.  I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.

 I was so upset I couldn't think straight.  The doctor told me to give him until this Friday to see if anyone could even help her and where I should go.  The thought that no one would be able to help her scared me to death.  Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first  son almost 10 years ago (nothing to do with scoliosis).  I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

Sue,Thank you. I've only been in this group a couple of days and everyone is so kind and helpful and supportive.  I wish I had found it sooner!  I'm sorry that you're having such a hard time getting the treatment that is needed.  I will keep Abi in my prayers and wish you all the best. Hopefully, next Tuesday will bring you what you've been waiting for.Patty  From: suzyinoxford

To: infantile_scoliosis Sent: Wednesday, May 27, 2009 5:02:01 PMSubject: Re: (unknown)

Hi Patty

I know Steph has given you great advise (particulalry about the cancellations) and I just wanted to add to keep on looking for treatment and keep asking questions. My daughter Abigai has had a Scoliosis since last September and all the doctors and physios said it was fine and would resolve itself. Finally I pushed for an Orthopaedic Surgeon to look in March and she had curves at 50 degs plus. At that point she was 20 months and cast shortly afterwards.

Through asking questions and speaking to lots of different doctors we soon discovered the cast she was in was okay and holding the curve but not offering much correction. Also it was incorrectly fitted. It has been exhausting but we think if all goes well that Abi (she's now nearly 23 months) will have an MRI and then a Mehta style cast put on her next Tuesday.

I so sorry for the loss of your son and can see how scary this must be. I think the main thing is that you are aware of your daughter's curve and are now searching for the best help for her. It sounds like you are in the US and there are doctors there that can help (we are in the UK hence the difficulty finding treatment)just keep on going and hopefully you will get a good cast for Isobella soon.

warmest wishes

Sue

>

>

> From: Patty Bowen <bowenpatty@ ...>

> Subject: [infantile_scoliosi s] (unknown)

> To: infantile_scoliosis @yahoogroups. com

> Date: Wednesday, May 27, 2009, 1:03 AM

>

>

>

>

>

>

>

>

>

>

> Hello, my name is Patty and I am new to all of this.  My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early  April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her.  I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either.  I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.  I was so upset I

couldn't

> think straight.  The doctor told me to give him until this Friday to see if anyone could even help her and where I should go.  The thought that no one would be able to help her scared me to death.  Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first  son almost 10 years ago (nothing to do with scoliosis).  I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

>

[Guest guest]

Our little boy is skinny, so he was still wearing some 6-12 month old stuff at 19 months. After the cast, he went up to 18-24 months in shirts. Basically, one age size up. The pants depend on if they have elastic or are adjustable. I went with almost all soft cotton stuff, elastic waists are good!

-Heidi

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Tuesday, May 26, 2009, 6:03 PM

Hello, my name is Patty and I am new to all of this. My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her. I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either. I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.

I was so upset I couldn't think straight. The doctor told me to give him until this Friday to see if anyone could even help her and where I should go. The thought that no one would be able to help her scared me to death. Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first son almost 10 years ago (nothing to do with scoliosis). I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

I get this too...I think we probably all have! I have found that family and friends are often the biggest culprits.....I think they are "trying" to make us feel better. But as Steph put it, we all understand here!!!

~Krista

Jack's mom, Jack is 22 months old in his 3rd cast from SLC

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Wednesday, May 27, 2009, 1:03 AM

Hello, my name is Patty and I am new to all of this. My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her. I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either. I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.

I was so upset I couldn't think straight. The doctor told me to give him until this Friday to see if anyone could even help her and where I should go. The thought that no one would be able to help her scared me to death. Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first son almost 10 years ago (nothing to do with scoliosis). I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

Patty,First of all I love you signature. I personally know that on a young child those braces stink. They put my son in one when he was just six months, sounds silly to me. Where do you live? We are in northern Indiana and are going to try to go to the Shriners in Chicago, it is very close to us. Well I think what you should do is what told me to do. HAve you doctor send your information to several doctors that are trained in Mehta casting and go to the one that can take you first. Often times when you go to a Shriners Hospitalthey will even pay for your lodging. Good luck.Beth Rettinger

Mother Of Rettinger

Not Yet in CastSubject: (unknown)To: infantile_scoliosis Date: Sunday, May 31, 2009, 12:35 AM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y. I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally). I don't know if I should travel double the distance to see or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to

go so much farther, esp. when I would have to pass Erie on my way to Rochester. I just want the best for my daughter & I need to make a move now before she gets any worse.All help appreciated,Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Thank you so much for your feedback. Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do nextTo: infantile_scoliosis Sent: Sunday, May 31, 2009 2:42:49 PMSubject: Re:

(unknown)

I have been on here for many years, before Dr. left Erie Shriners and everyone who was on the list at the time who went to Erie, couldn't stop talking about him.  He was very good and he was one of the very first docs to be trained in Mehta if I'm not mistaken.

 

Betty

Just a lurker on the list.  I'm an adult who has Scoliosis.  Had my first spinal fusion at age 9, second one age 12.  Any questions, just ask.

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Saturday, May 30, 2009 11:35:28 PMSubject: [infantile_scoliosi s] (unknown)

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y.  I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally).  I don't know if I should travel double the distance to see   or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to go so much farther, esp. when I would have to pass Erie on my way to Rochester.  I just want the best for my daughter & I need to make a move

now before she gets any worse.

All help appreciated,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Thanks so much. I'm sure you will be hearing from me soon!  Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do nextTo: infantile_scoliosis Sent: Sunday, May 31, 2009 6:12:55 PMSubject: Re:

(unknown)

Hi Patty,

Where do you live?  We went to Erie for our son and followed the doc there to Rochester, but that was mainly because the doc who took his place was just temporary and we weren't sure he bought into everything about ET.  That isn't true of the doc who casts at Erie now.  It is a wonderful place.  I loved it.  If you want more specifics or have questions please feel feel to email me!

Both places are wonderful.  You can't go wrong with either!

Jill and

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Sunday, May 31, 2009, 12:35 AM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y.  I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally).  I don't know if I should travel double the distance to see   or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to go so much farther, esp. when I would have to pass Erie on my way to Rochester.  I just want the best for my daughter & I need to make a move

now before she gets any worse.

All help appreciated,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Steph,Thank you so much. I'm sure I'll have lots of questions in the coming days.  Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do nextTo: infantile_scoliosis Sent: Sunday, May 31, 2009 9:42:58 PMSubject: Re: (unknown)

Hi Patty!

We go to Rochester and love the doc you were referred to....  Feel free to e-mail me any questions about Rochester and Erie....  Our first trip was in Erie....  Steph

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Sunday, May 31, 2009, 4:35 AM

Hello everyone! You have all been so welcoming as I joined the group this past week and now I want some opinions. In case you don't know,or need refreshed, my daughter Isabella was diagnosed in Feb. with scoliosis and they tried to brace her first. I'm not exactly sure of her bend right now but the last measurement told to me was 55 degrees. I just spoke with Isabella's doctor on Friday and he said that he sent all her records to Dr. in Rochester, N.Y.  I asked about the Erie Shriners since I am much closer but his recommendation is (he knows him personally).  I don't know if I should travel double the distance to see   or if I should work on my own and go to Erie since they are great as well, at least from what I've been reading on here. It just seems silly to go so much farther, esp. when I would have to pass Erie on my way to Rochester.  I just want the best for my daughter & I need to make a move

now before she gets any worse.

All help appreciated,

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Crystal, Thanks so much for the information. Have you heard anything about this Shriners being in danger of closing?  How interesting that you're also from western Pa and my daughter's birthday is 8/20/07. How long has had this first cast on?  What degree curve did have when this all started? Good luck at your next cast change. Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do nextFrom:

crystal garthwaite To: infantile_scoliosis Sent: Monday, June 1, 2009 7:15:33 PMSubject: Re: (unknown)

If I'm not mistaken, there are several care coordinators there? The one who deals with us is named Gail. I don't know how it is for everyone but for jesse  how the process went  was our pediatrician contacted Erie Shriners and set up the appt, we didn't have to apply to be seen. I think our pedi passed along the sense of urgency to them because we got in immediately.  They mailed us an info packet to fill out and bring to our appt and told us to bring copies of all xrays and mri's with us.  We went to the appt and met the dr (who is outstanding btw), he discussed everything with me in depth and he set jesse up to be casted the following month when he came back to erie. (the dr is from philly shriners and comes to erie for casting)It was a one day procedure. (sp?)  we had to be there at 6:30, jesse went in at 11:00

and we left around 5pm.We also are from western Pa and are 2 hrs from Erie.  If that's where you choose to go, I think you'll be amazed at the kindness and support your child and family receive.  If you have any questions or need phone numbers that i have, feel free to contact me.  Good luck and i wish all the best for your child.crystal

mom to jesse(bday: 8/22/07)

**currently in 1st cast from Erie Shriners, next cast change June 10

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Monday, June 1, 2009, 2:37 PM

I am looking into both Erie Shriners (preferred) & Rochester and wanted to know how each place handles the casting. Is it a one day process or is it inpatient? Should my first step with Erie be to call the care coordinator? Should I fill out an application or call? Any and all help is appreciated.  Thanks, Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Hi Patty!I first learned of some of Shriners closing from this group actually! I did express my concerns with several of the staff there and they assured me that many options are being considered to prevent it. I said to someone, "bill my insurance if you have to! we don't come here because it's free (though that's amazing that it works that way) we come here because you're trying to save my son's life!"I think in the worst case scenario that they did close down the road, we are very fortunate that Shriners in Philly is available to us as a back up to go to. Or Rochester even. Some of the group members have to travel great distances to receive treatment for their kids. has had this cast on since April 22. Dr plans to change his cast every 6-8 weeks. I think our cast changes are going to be whenever the dr is here from

philly. He's quite amazing! At our initial appt, he asked if my husband would be there for cast day and i teared up (truth be told i was tearing up quite a bit that day to begin with!) and told him is in Iraq. Right there on the spot he gave me his email address and said my husband is welcome to email him anytime to talk about our son, his condition, treatment, anything at all, and he'd be more than happy to help keep my husband in the loop. I was blown away! I brought my son there from a huge facility that treated like a number; here I'd found a doctor that "knew" we were all humans with hearts and emotions. had a curve of 60 on cast day. After the cast was on the dr told me he was very surprised and extremely pleased that they were able to achieve an in cast correction of approximately 10-12 degrees! I'm praying in earnest that 's curve is able to hold steady and not bounce too far back

before the next cast.How interesting our kids almost share a birthday! I've noticed several of us have children right around the same age. I've been reading and see i'm not the only one dealing with a crazy climbing monkey! lol, the cast has not slowed jesse down a bit. I'm convinced it's made him stronger and more daring than ever. The direct line for Erie is 1-. Or if you don't need to use the 800 number, it's . Both of those take you to the main desk. I'm sure if you tell them what you need, they'll direct you to the appropriate person to speak to.Good luck Patty. Along with everyone else, I'm always willing to listen if you need to talk. (hugs)crystal

mom to jesse(bday: 8/22/07)

**currently in 1st cast from Erie Shriners, next cast June 10**From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Monday, June 1, 2009, 2:37 PM

I am looking into both Erie Shriners (preferred) & Rochester and wanted to know how each place handles the casting. Is it a one day process or is it inpatient? Should my first step with Erie be to call the care coordinator? Should I fill out an application or call? Any and all help is appreciated. Thanks, Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

Thank you Liz. ~KristaJack's Mom, Jack is 22 months old in his 3rd cast from Shriners Hospital in Salt Lake City, Utah

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Wednesday, June 3, 2009, 1:17 PM

I don't know if I'm blind or not but where do I find the database that lists the doctors trained in Mehta casting?

Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do next

[Guest guest]

krista....

congrats! congrats! congrats! that is the best news!

natalie

(unknown)

To: infantile_scoliosis

Date: Saturday, June 20, 2009, 10:08 PM

Hi All,

I have to say that this journey brings many ups and downs....but this last trip to SLC brought up the biggest, unexpected high of all. Jack curve is now at a "zero"!!! I want to shout it from the roof tops!! I know that there are many new families on the group lately that are getting casts for the first time and are feeling sad, angry, a sense of loss...but hang in! I was in your shoes 8 months ago and EDF casting works!! Obviously there are many variables; age, the appropriate pediatric casting table, your child's flexibility, a idiopathic curve.....but when it is the right method...it does work!! Thank you , thank you, thank you!!! Thank God for Shriners and a very special MD.

OK now for the details....we got there and... thank you all for the advice that the brace process takes time...a trim here a shave there. We got to the Crystal Inn about 3.5 hrs. later. No pool....just too wiped out and needed to get dinner and the routine going. Jack did great with the brace and continues to do very well. We were told by the Dr. 20 hrs/day and that is what we are sticking to.. (I still don't know where I heard 16 hrs)?? Jack wore the brace all night and then we went back to the hospital for the "brace check"...this is when the miracle starts to happen. The prosthetist (..he's the best) said that I had the brace on correctly... which really is a lot harder than it looks...still stresses me out...but I am hanging in! Then they sent us to get an xray in the brace. My husband took Jack in (because I am 5 months pregnant) and when he came out he rolled his eyes as Jack was screaming... .it did not go well. Then the xray tech (I swear she was wearing a halo) said..."it looks really good, you have to come see this"! I walked over to the machine and saw the very best xray ever!!! I thought 12 degrees looked good, which Jack was in the the 3rd cast back in April (2months ago). I grabbed my husband and Jack and we just had a family/group hug as I bawled my eyes out!! We then walked back to the exam room. The MD (he had a halo on too) said...."Jack is measuring a zero." ** Now this Doctor is not one to sugar coat...if Jack was measuring a 2 he would say that. So when he said zero, he meant it. He looked just has thrilled/shocked as the rest of us! He said that we need to come back in 5 months to discuss weaning from the brace! Now I don't really know what that means.....he may have another brace made that he wears at night, is what I am thinking, that is what (prothetist) mentioned. That brings us to Nov

ember and I will have a 1 month old, but we are going to make it work.

Sorry this is so long, just wanted to let the group know that there is light at the end of the long and winding tunnel!! I have been trying to get caught up on the posts. I hope that all is well with all of your children.

~Krista

Jack's Mom, Jack is 23 months old, in his 1st brace from Shriners Hospital in Salt Lake City, Utah

An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!

[Guest guest]

What a wonderful blessing!!!!!! My eyes filled with tears as I read this and my heart is so happy for Jack. Your whole family!My older son calls his little "turtle" brother. As I was reading what you wrote, I couldn't help but recalling that "slow and steady" does indeed "win the race." Thank you for sharing your wonderful news! It's a ray of sunshine and encouragement for me!crystal

mom to jesse(bday: 8/22/07)

**currently in 2nd cast from Erie Shriners, next cast Aug 5**Subject: (unknown)To: infantile_scoliosis Date: Saturday, June 20, 2009, 6:08 PM

Hi All,

I have to say that this journey brings many ups and downs....but this last trip to SLC brought up the biggest, unexpected high of all. Jack curve is now at a "zero"!!! I want to shout it from the roof tops!! I know that there are many new families on the group lately that are getting casts for the first time and are feeling sad, angry, a sense of loss...but hang in! I was in your shoes 8 months ago and EDF casting works!! Obviously there are many variables; age, the appropriate pediatric casting table, your child's flexibility, a idiopathic curve.....but when it is the right method...it does work!! Thank you , thank you, thank you!!! Thank God for Shriners and a very special MD.

OK now for the details....we got there and... thank you all for the advice that the brace process takes time...a trim here a shave there. We got to the Crystal Inn about 3.5 hrs. later. No pool...just too wiped out and needed to get dinner and the routine going. Jack did great with the brace and continues to do very well. We were told by the Dr. 20 hrs/day and that is what we are sticking to.. (I still don't know where I heard 16 hrs)?? Jack wore the brace all night and then we went back to the hospital for the "brace check"...this is when the miracle starts to happen. The prosthetist (..he's the best) said that I had the brace on correctly... which really is a lot harder than it looks...still stresses me out...but I am hanging in! Then they sent us to get an xray in the brace. My husband took Jack in (because I am 5 months pregnant) and when he came out

he rolled his eyes as Jack was screaming... .it did not go well. Then the xray tech (I swear she was wearing a halo) said..."it looks really good, you have to come see this"! I walked over to the machine and saw the very best xray ever!!! I thought 12 degrees looked good, which Jack was in the the 3rd cast back in April (2months ago). I grabbed my husband and Jack and we just had a family/group hug as I bawled my eyes out!! We then walked back to the exam room. The MD (he had a halo on too) said...."Jack is measuring a zero." ** Now this Doctor is not one to sugar coat...if Jack was measuring a 2 he would say that. So when he said zero, he meant it. He looked just has thrilled/shocked as the rest of us! He said that we need to come back in 5 months to discuss weaning from the brace! Now I don't really know what that means.....he may have another brace made that he wears at

night, is what I am thinking, that is what (prothetist) mentioned. That brings us to November and I will have a 1 month old, but we are going to make it work.

Sorry this is so long, just wanted to let the group know that there is light at the end of the long and winding tunnel!! I have been trying to get caught up on the posts. I hope that all is well with all of your children. ~KristaJack's Mom, Jack is 23 months old, in his 1st brace from Shriners Hospital in Salt Lake City, Utah

[Guest guest]

Wonderful news!!!!! Hoorah!

Jill

Subject: (unknown)To: infantile_scoliosis Date: Saturday, June 20, 2009, 6:08 PM

Hi All,

I have to say that this journey brings many ups and downs....but this last trip to SLC brought up the biggest, unexpected high of all. Jack curve is now at a "zero"!!! I want to shout it from the roof tops!! I know that there are many new families on the group lately that are getting casts for the first time and are feeling sad, angry, a sense of loss...but hang in! I was in your shoes 8 months ago and EDF casting works!! Obviously there are many variables; age, the appropriate pediatric casting table, your child's flexibility, a idiopathic curve.....but when it is the right method...it does work!! Thank you , thank you, thank you!!! Thank God for Shriners and a very special MD.

OK now for the details....we got there and... thank you all for the advice that the brace process takes time...a trim here a shave there. We got to the Crystal Inn about 3.5 hrs. later. No pool...just too wiped out and needed to get dinner and the routine going. Jack did great with the brace and continues to do very well. We were told by the Dr. 20 hrs/day and that is what we are sticking to.. (I still don't know where I heard 16 hrs)?? Jack wore the brace all night and then we went back to the hospital for the "brace check"...this is when the miracle starts to happen. The prosthetist (..he's the best) said that I had the brace on correctly... which really is a lot harder than it looks...still stresses me out...but I am hanging in! Then they sent us to get an xray in the brace. My husband took Jack in (because I am 5 months pregnant) and when he came out

he rolled his eyes as Jack was screaming... .it did not go well. Then the xray tech (I swear she was wearing a halo) said..."it looks really good, you have to come see this"! I walked over to the machine and saw the very best xray ever!!! I thought 12 degrees looked good, which Jack was in the the 3rd cast back in April (2months ago). I grabbed my husband and Jack and we just had a family/group hug as I bawled my eyes out!! We then walked back to the exam room. The MD (he had a halo on too) said...."Jack is measuring a zero." ** Now this Doctor is not one to sugar coat...if Jack was measuring a 2 he would say that. So when he said zero, he meant it. He looked just has thrilled/shocked as the rest of us! He said that we need to come back in 5 months to discuss weaning from the brace! Now I don't really know what that means.....he may have another brace made that he wears at

night, is what I am thinking, that is what (prothetist) mentioned. That brings us to November and I will have a 1 month old, but we are going to make it work.

Sorry this is so long, just wanted to let the group know that there is light at the end of the long and winding tunnel!! I have been trying to get caught up on the posts. I hope that all is well with all of your children. ~KristaJack's Mom, Jack is 23 months old, in his 1st brace from Shriners Hospital in Salt Lake City, Utah

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> Subject: (unknown)

> To: infantile_scoliosis

> Date: Saturday, June 20, 2009, 5:08 PM

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> Hi All,

> I have to say that this journey brings many ups and downs....but this last

trip to SLC brought up the biggest, unexpected high of all.  Jack curve is now

at a " zero " !!!  I want to shout it from the roof tops!!  I know that there are

many new families on the group lately that are getting casts for the first time

and are feeling sad, angry, a sense of loss...but hang in!  I was in your shoes

8 months ago and EDF casting works!!  Obviously there are many variables; age,

the appropriate pediatric casting table, your child's flexibility, a idiopathic

curve.....but when it is the right method...it does work!!  Thank you ,

thank you, thank you!!!  Thank God for Shriners and a very special MD.

>  

> OK now for the details....we got there and... thank you all for the advice

that the brace process takes time...a trim here a shave there.  We got to the

Crystal Inn about 3.5 hrs. later.  No pool...just too wiped out and needed to

get dinner and the routine going.  Jack did great with the brace and continues

to do very well.  We were told by the Dr. 20 hrs/day and that is what we are

sticking to.. (I still don't know where I heard 16 hrs)??  Jack wore the brace

all night and then we went back to the hospital for the " brace check " ...this is

when the miracle starts to happen.  The prosthetist (..he's the best) said

that I had the brace on correctly... which really is a lot harder than it

looks...still stresses me out...but I am hanging in!  Then they sent us to get

an xray in the brace.  My husband took Jack in  (because I am 5 months pregnant)

and when he came out

> he rolled his eyes as Jack was screaming... .it did not go well.  Then the

xray tech (I swear she was wearing a halo) said... " it looks really good, you

have to come see this " !  I walked over to the machine and saw the very best xray

ever!!!  I thought 12 degrees looked good, which Jack was in the the 3rd cast

back in April (2months ago).  I grabbed my husband and Jack and we just had a

family/group hug as I bawled my eyes out!!  We then walked back to the exam

room.  The MD (he had a halo on too) said.... " Jack is measuring a zero. "    **

Now this Doctor is not one to sugar coat...if Jack was measuring a 2 he would

say that.  So when he said  zero, he meant it.  He looked just has

thrilled/shocked as the rest of us!  He said that we need to come back in 5

months to discuss weaning from the brace!  Now I don't really know what that

means.....he may have another brace made that he wears at

> night, is what I am thinking, that is what (prothetist) mentioned. 

That brings us to November and I will have a 1 month old, but we are going to

make it work. 

>  

> Sorry this is so long, just wanted to let the group know that there is light

at the end of the long and winding tunnel!!  I have been trying to get caught up

on the posts.  I hope that all is well with all of your children. 

>

> ~Krista

> Jack's Mom, Jack is 23 months old, in his 1st brace from Shriners Hospital in

Salt Lake City, Utah

>