Re: New to the group! 8 months old Diagnosed with Infantile Scoliosis

[Guest guest]

Jenn, I completely know where you are coming from.  We have 2 boys with IS.  One progressed and went on to casting and one resolved on his own.  My son who was casted went into his first cast at 15 months old, at 47 degrees laying down. He is now 4 years old, and has been holding out of cast at 0.  I will say make sure that you get an EDF Mehta style cast from a doctor that believes in early treatment.

Where do you guys live and what were the numbers?  How old is your little one.  Feel free to email me directly if you want to chat more.  

[Guest guest]

Jenn, I completely know where you are coming from.  We have 2 boys with IS.  One progressed and went on to casting and one resolved on his own.  My son who was casted went into his first cast at 15 months old, at 47 degrees laying down. He is now 4 years old, and has been holding out of cast at 0.  I will say make sure that you get an EDF Mehta style cast from a doctor that believes in early treatment.

Where do you guys live and what were the numbers?  How old is your little one.  Feel free to email me directly if you want to chat more.  

[Guest guest]

Jenn,

Our daughter was diagnosed at 9 months and I can completely relate to how you

are feeling. It is a scary thing to hear and the waiting period is very hard. My

daughter is currently in her first cast (getting ready for a second cast). I can

tell you that this support group has been my life line. These other parents on

here have been nothing short of wonderful! They have answered so many questions

and made me feel like we weren't so alone. If you have any questions you can

always ask me I am new to this as well, so we can learn together. Have you

checked out the Infantile scoliosis Outreach Program? There is a list on the

site of questions to ask your doctor and how to be prepared. I wish I would have

had that list before our first visit because it would have been very helpful!

(its under the resources tab and is called orthopedic surgeon questions) It is a

wonderful website that has A TON of information as well. It was super helpful

for us when we started doing our research. Good luck to you and your daughter!

>

> HI my name is Jenn & my 8 month old daughter Jude was recently diagnosed with

Infantile Scoliosis as of 6-18-12.

>

> As a baby she has been more than perfect. So when her father & I noticed that

her left side of her back near her ribs stuck out further than her right we

decided to take her to her pediatrician to be examined. After the Dr did an

examination he agreed that something was not right and sent us for an Xray. Upon

seeing that Xray we discovered she has a C shaped curve in her spine that was

indeed Infantile Scoliosis and as a mother my heart sank.

>

> I immediately went home & googled as much information as I could about this

rare & terrifying diagnosis they had given me, now bear in mind I didn't hear

much after the dr showed me the X-Ray & told me he was referring us to

Children's Orthopedic Surgeon. We have her an appointment scheduled for next

month & I am just looking for some advice, ANY advice as to how to proceed what

questions to ask & so forth so please send it my way!

>

> Thanks,

> Jenn

>

[Guest guest]

Jenn,

Our daughter was diagnosed at 9 months and I can completely relate to how you

are feeling. It is a scary thing to hear and the waiting period is very hard. My

daughter is currently in her first cast (getting ready for a second cast). I can

tell you that this support group has been my life line. These other parents on

here have been nothing short of wonderful! They have answered so many questions

and made me feel like we weren't so alone. If you have any questions you can

always ask me I am new to this as well, so we can learn together. Have you

checked out the Infantile scoliosis Outreach Program? There is a list on the

site of questions to ask your doctor and how to be prepared. I wish I would have

had that list before our first visit because it would have been very helpful!

(its under the resources tab and is called orthopedic surgeon questions) It is a

wonderful website that has A TON of information as well. It was super helpful

for us when we started doing our research. Good luck to you and your daughter!

>

> HI my name is Jenn & my 8 month old daughter Jude was recently diagnosed with

Infantile Scoliosis as of 6-18-12.

>

> As a baby she has been more than perfect. So when her father & I noticed that

her left side of her back near her ribs stuck out further than her right we

decided to take her to her pediatrician to be examined. After the Dr did an

examination he agreed that something was not right and sent us for an Xray. Upon

seeing that Xray we discovered she has a C shaped curve in her spine that was

indeed Infantile Scoliosis and as a mother my heart sank.

>

> I immediately went home & googled as much information as I could about this

rare & terrifying diagnosis they had given me, now bear in mind I didn't hear

much after the dr showed me the X-Ray & told me he was referring us to

Children's Orthopedic Surgeon. We have her an appointment scheduled for next

month & I am just looking for some advice, ANY advice as to how to proceed what

questions to ask & so forth so please send it my way!

>

> Thanks,

> Jenn

>

[Guest guest]

Hey Jenn--

Our son Logan was diagnosed at 5 months and was casted at 9 months. What state are you in? Other moms will chime in and let you know first hand how the docs are at the places. This may help ease your mind a little. It is a whirl wind and totally scary, but the more information you have---the better. This group is amazing and really has been my sanity marker. The group ranges from newbies to pros, to cured. YES CURED! Since Logan was only 9 months old, we were terribly worried about him still being a baby in a cast. How it was going to affect all of his milestones and if he would even be able to learn how to do things with a 3 pound cast on. Logan surprised us everyday. not only did the milestones blow by, he kept up with his big brothers like a champ. There is nothing this kid cant do.

Please ask the group all of your questions, no question has not been heard before at least once...

Good luck at your appts

Logan's mama (45 down to 7 out of cast in 3/12, 14th cast, 3 years old)

casted at shriners in SC

From: fitnessjunkie26 <fitnessjunkie26@...>infantile scoliosis treatment Sent: Tuesday, June 26, 2012 1:55 PMSubject: New to the group! 8 months old Diagnosed with Infantile Scoliosis

HI my name is Jenn & my 8 month old daughter Jude was recently diagnosed with Infantile Scoliosis as of 6-18-12. As a baby she has been more than perfect. So when her father & I noticed that her left side of her back near her ribs stuck out further than her right we decided to take her to her pediatrician to be examined. After the Dr did an examination he agreed that something was not right and sent us for an Xray. Upon seeing that Xray we discovered she has a C shaped curve in her spine that was indeed Infantile Scoliosis and as a mother my heart sank. I immediately went home & googled as much information as I could about this rare & terrifying diagnosis they had given me, now bear in mind I didn't hear much after the dr showed me the X-Ray & told me he was referring us to Children's Orthopedic Surgeon. We have her an appointment scheduled for next month & I am just looking for some advice, ANY advice as to

how to proceed what questions to ask & so forth so please send it my way!Thanks,Jenn

[Guest guest]

Hey Jenn--

Our son Logan was diagnosed at 5 months and was casted at 9 months. What state are you in? Other moms will chime in and let you know first hand how the docs are at the places. This may help ease your mind a little. It is a whirl wind and totally scary, but the more information you have---the better. This group is amazing and really has been my sanity marker. The group ranges from newbies to pros, to cured. YES CURED! Since Logan was only 9 months old, we were terribly worried about him still being a baby in a cast. How it was going to affect all of his milestones and if he would even be able to learn how to do things with a 3 pound cast on. Logan surprised us everyday. not only did the milestones blow by, he kept up with his big brothers like a champ. There is nothing this kid cant do.

Please ask the group all of your questions, no question has not been heard before at least once...

Good luck at your appts

Logan's mama (45 down to 7 out of cast in 3/12, 14th cast, 3 years old)

casted at shriners in SC

From: fitnessjunkie26 <fitnessjunkie26@...>infantile scoliosis treatment Sent: Tuesday, June 26, 2012 1:55 PMSubject: New to the group! 8 months old Diagnosed with Infantile Scoliosis

HI my name is Jenn & my 8 month old daughter Jude was recently diagnosed with Infantile Scoliosis as of 6-18-12. As a baby she has been more than perfect. So when her father & I noticed that her left side of her back near her ribs stuck out further than her right we decided to take her to her pediatrician to be examined. After the Dr did an examination he agreed that something was not right and sent us for an Xray. Upon seeing that Xray we discovered she has a C shaped curve in her spine that was indeed Infantile Scoliosis and as a mother my heart sank. I immediately went home & googled as much information as I could about this rare & terrifying diagnosis they had given me, now bear in mind I didn't hear much after the dr showed me the X-Ray & told me he was referring us to Children's Orthopedic Surgeon. We have her an appointment scheduled for next month & I am just looking for some advice, ANY advice as to

how to proceed what questions to ask & so forth so please send it my way!Thanks,Jenn

[Guest guest]

Hi Abbey and Jenn,

This is all new to me too. Olivia was just diagnosed with IS and we're in the

process of scheduling her casting. We spoke with the doctor last night and he

was telling us that for the first night of her cast she will be admitted to the

hospital overnight for observation. Abbey, did you have to do this? How did it

go? Did your daughter have any breathing issues? Thank you so much. I can tell

this page will be a lifeline for us over the next few weeks. It's so nice to be

speaking with parents who are in the same boat and understand what's going on.

Thank you again!

> >

> > HI my name is Jenn & my 8 month old daughter Jude was recently diagnosed

with Infantile Scoliosis as of 6-18-12.

> >

> > As a baby she has been more than perfect. So when her father & I noticed

that her left side of her back near her ribs stuck out further than her right we

decided to take her to her pediatrician to be examined. After the Dr did an

examination he agreed that something was not right and sent us for an Xray. Upon

seeing that Xray we discovered she has a C shaped curve in her spine that was

indeed Infantile Scoliosis and as a mother my heart sank.

> >

> > I immediately went home & googled as much information as I could about this

rare & terrifying diagnosis they had given me, now bear in mind I didn't hear

much after the dr showed me the X-Ray & told me he was referring us to

Children's Orthopedic Surgeon. We have her an appointment scheduled for next

month & I am just looking for some advice, ANY advice as to how to proceed what

questions to ask & so forth so please send it my way!

> >

> > Thanks,

> > Jenn

> >

>

[Guest guest]

Hi Abbey and Jenn,

This is all new to me too. Olivia was just diagnosed with IS and we're in the

process of scheduling her casting. We spoke with the doctor last night and he

was telling us that for the first night of her cast she will be admitted to the

hospital overnight for observation. Abbey, did you have to do this? How did it

go? Did your daughter have any breathing issues? Thank you so much. I can tell

this page will be a lifeline for us over the next few weeks. It's so nice to be

speaking with parents who are in the same boat and understand what's going on.

Thank you again!

> >

> > HI my name is Jenn & my 8 month old daughter Jude was recently diagnosed

with Infantile Scoliosis as of 6-18-12.

> >

> > As a baby she has been more than perfect. So when her father & I noticed

that her left side of her back near her ribs stuck out further than her right we

decided to take her to her pediatrician to be examined. After the Dr did an

examination he agreed that something was not right and sent us for an Xray. Upon

seeing that Xray we discovered she has a C shaped curve in her spine that was

indeed Infantile Scoliosis and as a mother my heart sank.

> >

> > I immediately went home & googled as much information as I could about this

rare & terrifying diagnosis they had given me, now bear in mind I didn't hear

much after the dr showed me the X-Ray & told me he was referring us to

Children's Orthopedic Surgeon. We have her an appointment scheduled for next

month & I am just looking for some advice, ANY advice as to how to proceed what

questions to ask & so forth so please send it my way!

> >

> > Thanks,

> > Jenn

> >

>

[Guest guest]

Jenn,

We did not have to stay over night at the hospital but they did insist

that we stay close by. This was a change for them in the past year as

they are now charging insurance companies (if you have it). It worked

just fine for us, but my son also doesn't have any other issues but the

IS. We did go back the next morning to have a once over before flying

home that afternoon. No breathing issues but they do monitor his oxygen

levels closely since we live in NE & receive casts at SLC Shriners & the

elevation level is much higher then home. On a different note our peds

doc does insist that we come in when my son gets colds now as they don't

want it to get into his lungs...right now they have him doing some

breathing treatments (like I did as a kid with asthma) as a precaution

since he has a cold & a slight weasing. I'm glad that they do this since

I we really don't want to have to cut the cast off for something like that

early.

Amber

> Hi Abbey and Jenn,

>

> This is all new to me too. Olivia was just diagnosed with IS and we're

> in the process of scheduling her casting. We spoke with the doctor last

> night and he was telling us that for the first night of her cast she

> will be admitted to the hospital overnight for observation. Abbey, did

> you have to do this? How did it go? Did your daughter have any

> breathing issues? Thank you so much. I can tell this page will be a

> lifeline for us over the next few weeks. It's so nice to be speaking

> with parents who are in the same boat and understand what's going on.

> Thank you again!

>

>

>

>

>

>> >

>> > HI my name is Jenn & my 8 month old daughter Jude was recently

>> diagnosed with Infantile Scoliosis as of 6-18-12.

>> >

>> > As a baby she has been more than perfect. So when her father & I

>> noticed that her left side of her back near her ribs stuck out further

>> than her right we decided to take her to her pediatrician to be

>> examined. After the Dr did an examination he agreed that something was

>> not right and sent us for an Xray. Upon seeing that Xray we discovered

>> she has a C shaped curve in her spine that was indeed Infantile

>> Scoliosis and as a mother my heart sank.

>> >

>> > I immediately went home & googled as much information as I could

>> about this rare & terrifying diagnosis they had given me, now bear in

>> mind I didn't hear much after the dr showed me the X-Ray & told me he

>> was referring us to Children's Orthopedic Surgeon. We have her an

>> appointment scheduled for next month & I am just looking for some

>> advice, ANY advice as to how to proceed what questions to ask & so

>> forth so please send it my way!

>> >

>> > Thanks,

>> > Jenn

>> >

>>

>

>

>

[Guest guest]

Jenn,

We did not have to stay over night at the hospital but they did insist

that we stay close by. This was a change for them in the past year as

they are now charging insurance companies (if you have it). It worked

just fine for us, but my son also doesn't have any other issues but the

IS. We did go back the next morning to have a once over before flying

home that afternoon. No breathing issues but they do monitor his oxygen

levels closely since we live in NE & receive casts at SLC Shriners & the

elevation level is much higher then home. On a different note our peds

doc does insist that we come in when my son gets colds now as they don't

want it to get into his lungs...right now they have him doing some

breathing treatments (like I did as a kid with asthma) as a precaution

since he has a cold & a slight weasing. I'm glad that they do this since

I we really don't want to have to cut the cast off for something like that

early.

Amber

> Hi Abbey and Jenn,

>

> This is all new to me too. Olivia was just diagnosed with IS and we're

> in the process of scheduling her casting. We spoke with the doctor last

> night and he was telling us that for the first night of her cast she

> will be admitted to the hospital overnight for observation. Abbey, did

> you have to do this? How did it go? Did your daughter have any

> breathing issues? Thank you so much. I can tell this page will be a

> lifeline for us over the next few weeks. It's so nice to be speaking

> with parents who are in the same boat and understand what's going on.

> Thank you again!

>

>

>

>

>

>> >

>> > HI my name is Jenn & my 8 month old daughter Jude was recently

>> diagnosed with Infantile Scoliosis as of 6-18-12.

>> >

>> > As a baby she has been more than perfect. So when her father & I

>> noticed that her left side of her back near her ribs stuck out further

>> than her right we decided to take her to her pediatrician to be

>> examined. After the Dr did an examination he agreed that something was

>> not right and sent us for an Xray. Upon seeing that Xray we discovered

>> she has a C shaped curve in her spine that was indeed Infantile

>> Scoliosis and as a mother my heart sank.

>> >

>> > I immediately went home & googled as much information as I could

>> about this rare & terrifying diagnosis they had given me, now bear in

>> mind I didn't hear much after the dr showed me the X-Ray & told me he

>> was referring us to Children's Orthopedic Surgeon. We have her an

>> appointment scheduled for next month & I am just looking for some

>> advice, ANY advice as to how to proceed what questions to ask & so

>> forth so please send it my way!

>> >

>> > Thanks,

>> > Jenn

>> >

>>

>

>

>

[Guest guest]

Does anyone know anything about shriners in shreveport, la or children's in Oklahoma?Sent from my iPhoneOn Jun 27, 2012, at 1:12 PM, "Amber Scholl" <amber@...> wrote:

Jenn,

We did not have to stay over night at the hospital but they did insist

that we stay close by. This was a change for them in the past year as

they are now charging insurance companies (if you have it). It worked

just fine for us, but my son also doesn't have any other issues but the

IS. We did go back the next morning to have a once over before flying

home that afternoon. No breathing issues but they do monitor his oxygen

levels closely since we live in NE & receive casts at SLC Shriners & the

elevation level is much higher then home. On a different note our peds

doc does insist that we come in when my son gets colds now as they don't

want it to get into his lungs...right now they have him doing some

breathing treatments (like I did as a kid with asthma) as a precaution

since he has a cold & a slight weasing. I'm glad that they do this since

I we really don't want to have to cut the cast off for something like that

early.

Amber

> Hi Abbey and Jenn,

>

> This is all new to me too. Olivia was just diagnosed with IS and we're

> in the process of scheduling her casting. We spoke with the doctor last

> night and he was telling us that for the first night of her cast she

> will be admitted to the hospital overnight for observation. Abbey, did

> you have to do this? How did it go? Did your daughter have any

> breathing issues? Thank you so much. I can tell this page will be a

> lifeline for us over the next few weeks. It's so nice to be speaking

> with parents who are in the same boat and understand what's going on.

> Thank you again!

>

>

>

>

>

>> >

>> > HI my name is Jenn & my 8 month old daughter Jude was recently

>> diagnosed with Infantile Scoliosis as of 6-18-12.

>> >

>> > As a baby she has been more than perfect. So when her father & I

>> noticed that her left side of her back near her ribs stuck out further

>> than her right we decided to take her to her pediatrician to be

>> examined. After the Dr did an examination he agreed that something was

>> not right and sent us for an Xray. Upon seeing that Xray we discovered

>> she has a C shaped curve in her spine that was indeed Infantile

>> Scoliosis and as a mother my heart sank.

>> >

>> > I immediately went home & googled as much information as I could

>> about this rare & terrifying diagnosis they had given me, now bear in

>> mind I didn't hear much after the dr showed me the X-Ray & told me he

>> was referring us to Children's Orthopedic Surgeon. We have her an

>> appointment scheduled for next month & I am just looking for some

>> advice, ANY advice as to how to proceed what questions to ask & so

>> forth so please send it my way!

>> >

>> > Thanks,

>> > Jenn

>> >

>>

>

>

>

=

[Guest guest]

Interesting,

We are also from NE. I will keep that in mind about the colds and whatnot.

> >> >

> >> > HI my name is Jenn & my 8 month old daughter Jude was recently

> >> diagnosed with Infantile Scoliosis as of 6-18-12.

> >> >

> >> > As a baby she has been more than perfect. So when her father & I

> >> noticed that her left side of her back near her ribs stuck out further

> >> than her right we decided to take her to her pediatrician to be

> >> examined. After the Dr did an examination he agreed that something was

> >> not right and sent us for an Xray. Upon seeing that Xray we discovered

> >> she has a C shaped curve in her spine that was indeed Infantile

> >> Scoliosis and as a mother my heart sank.

> >> >

> >> > I immediately went home & googled as much information as I could

> >> about this rare & terrifying diagnosis they had given me, now bear in

> >> mind I didn't hear much after the dr showed me the X-Ray & told me he

> >> was referring us to Children's Orthopedic Surgeon. We have her an

> >> appointment scheduled for next month & I am just looking for some

> >> advice, ANY advice as to how to proceed what questions to ask & so

> >> forth so please send it my way!

> >> >

> >> > Thanks,

> >> > Jenn

> >> >

> >>

> >

> >

> >

>

[Guest guest]

We live in OKC, OK but take our daughter to Shriner's in Salt Lake City for casting. OKC Children's DOES NOT do EDF casting, they do not have the proper frame for it. They do Risser casting, just FYI. On Jun 27, 2012, at 1:37 PM, Green <fitnessjunkie26@...> wrote:

Does anyone know anything about shriners in shreveport, la or children's in Oklahoma?Sent from my iPhoneOn Jun 27, 2012, at 1:12 PM, "Amber Scholl" <amber@...> wrote:

Jenn,

We did not have to stay over night at the hospital but they did insist

that we stay close by. This was a change for them in the past year as

they are now charging insurance companies (if you have it). It worked

just fine for us, but my son also doesn't have any other issues but the

IS. We did go back the next morning to have a once over before flying

home that afternoon. No breathing issues but they do monitor his oxygen

levels closely since we live in NE & receive casts at SLC Shriners & the

elevation level is much higher then home. On a different note our peds

doc does insist that we come in when my son gets colds now as they don't

want it to get into his lungs...right now they have him doing some

breathing treatments (like I did as a kid with asthma) as a precaution

since he has a cold & a slight weasing. I'm glad that they do this since

I we really don't want to have to cut the cast off for something like that

early.

Amber

> Hi Abbey and Jenn,

>

> This is all new to me too. Olivia was just diagnosed with IS and we're

> in the process of scheduling her casting. We spoke with the doctor last

> night and he was telling us that for the first night of her cast she

> will be admitted to the hospital overnight for observation. Abbey, did

> you have to do this? How did it go? Did your daughter have any

> breathing issues? Thank you so much. I can tell this page will be a

> lifeline for us over the next few weeks. It's so nice to be speaking

> with parents who are in the same boat and understand what's going on.

> Thank you again!

>

>

>

>

>

>> >

>> > HI my name is Jenn & my 8 month old daughter Jude was recently

>> diagnosed with Infantile Scoliosis as of 6-18-12.

>> >

>> > As a baby she has been more than perfect. So when her father & I

>> noticed that her left side of her back near her ribs stuck out further

>> than her right we decided to take her to her pediatrician to be

>> examined. After the Dr did an examination he agreed that something was

>> not right and sent us for an Xray. Upon seeing that Xray we discovered

>> she has a C shaped curve in her spine that was indeed Infantile

>> Scoliosis and as a mother my heart sank.

>> >

>> > I immediately went home & googled as much information as I could

>> about this rare & terrifying diagnosis they had given me, now bear in

>> mind I didn't hear much after the dr showed me the X-Ray & told me he

>> was referring us to Children's Orthopedic Surgeon. We have her an

>> appointment scheduled for next month & I am just looking for some

>> advice, ANY advice as to how to proceed what questions to ask & so

>> forth so please send it my way!

>> >

>> > Thanks,

>> > Jenn

>> >

>>

>

>

>

=

[Guest guest]

We live in McAlester! How hard was it to get into Salt lake? Do they pay for your flight? Sent from my iPhoneOn Jun 27, 2012, at 2:03 PM, Logan <mariaelogan@...> wrote:

We live in OKC, OK but take our daughter to Shriner's in Salt Lake City for casting. OKC Children's DOES NOT do EDF casting, they do not have the proper frame for it. They do Risser casting, just FYI. On Jun 27, 2012, at 1:37 PM, Green <fitnessjunkie26@...> wrote:

Does anyone know anything about shriners in shreveport, la or children's in Oklahoma?Sent from my iPhoneOn Jun 27, 2012, at 1:12 PM, "Amber Scholl" <amber@...> wrote:

Jenn,

We did not have to stay over night at the hospital but they did insist

that we stay close by. This was a change for them in the past year as

they are now charging insurance companies (if you have it). It worked

just fine for us, but my son also doesn't have any other issues but the

IS. We did go back the next morning to have a once over before flying

home that afternoon. No breathing issues but they do monitor his oxygen

levels closely since we live in NE & receive casts at SLC Shriners & the

elevation level is much higher then home. On a different note our peds

doc does insist that we come in when my son gets colds now as they don't

want it to get into his lungs...right now they have him doing some

breathing treatments (like I did as a kid with asthma) as a precaution

since he has a cold & a slight weasing. I'm glad that they do this since

I we really don't want to have to cut the cast off for something like that

early.

Amber

> Hi Abbey and Jenn,

>

> This is all new to me too. Olivia was just diagnosed with IS and we're

> in the process of scheduling her casting. We spoke with the doctor last

> night and he was telling us that for the first night of her cast she

> will be admitted to the hospital overnight for observation. Abbey, did

> you have to do this? How did it go? Did your daughter have any

> breathing issues? Thank you so much. I can tell this page will be a

> lifeline for us over the next few weeks. It's so nice to be speaking

> with parents who are in the same boat and understand what's going on.

> Thank you again!

>

>

>

>

>

>> >

>> > HI my name is Jenn & my 8 month old daughter Jude was recently

>> diagnosed with Infantile Scoliosis as of 6-18-12.

>> >

>> > As a baby she has been more than perfect. So when her father & I

>> noticed that her left side of her back near her ribs stuck out further

>> than her right we decided to take her to her pediatrician to be

>> examined. After the Dr did an examination he agreed that something was

>> not right and sent us for an Xray. Upon seeing that Xray we discovered

>> she has a C shaped curve in her spine that was indeed Infantile

>> Scoliosis and as a mother my heart sank.

>> >

>> > I immediately went home & googled as much information as I could

>> about this rare & terrifying diagnosis they had given me, now bear in

>> mind I didn't hear much after the dr showed me the X-Ray & told me he

>> was referring us to Children's Orthopedic Surgeon. We have her an

>> appointment scheduled for next month & I am just looking for some

>> advice, ANY advice as to how to proceed what questions to ask & so

>> forth so please send it my way!

>> >

>> > Thanks,

>> > Jenn

>> >

>>

>

>

>

=

=

[Guest guest]

There are two other families here in the OKC metro area (that we know of) that have kids being casted, or previously casted. They have all gone to SLC Shriner's so we went the same route on their recommendation & that of , the ISOP Founder. (one family did start here at Children's, but switched to SLC Shriner's) The Dr in SLC was one of the first to learn the EDF technique & he and his team are amazing! It wasn't too hard to get in- they actually had a cancellation the day after we applied and we ended up flying out last minute the week of Christmas to be casted. (we were actually on vacation in San , TX at the time when they called us) Needless to say, we were NOT prepared for casting! We had called them & done the app on the phone, then emailed pictures of her back, copies of her x-rays & a letter from us asking for their help that included a picture of our family so they could put a face with a back & X-rays! We were not expecting to get in so soon & hadn't had time to even familiarize ourselves with what questions to ask, what would happen, etc. We contacted the local Shrine here in OKC & they said they would help us pay for plane tickets for one parent & the child (and no, they won't pay for the other parent even if the child is young enough to fly for free- we asked!) Of course, Shriner's also covers any $$ that the insurance co won't pay for treatment, which is a HUGE blessing, even though it's a looong way to travel. They didn't cover our plane tickets the first time since it was so last minute & the week of Christmas to boot, but they did on the 2nd time. They do require you fly Southwest, just FYI. The Delta non-stop flight is only 2 hours & way easier for us since I have a husband who is deathly afraid of flying, so we've actually just bought our own tickets a couple of times now to avoid layovers. Of course our little girl will be 2 in a few months & we'll have to start paying for her own seat, so we'll probably go back to Southwest at that point. Anyway, let me know if you have more questions! Mommy of Olive, 21 months, 73 degrees before casting, 27 degrees in cast On Jun 27, 2012, at 2:06 PM, Green <fitnessjunkie26@...> wrote:

We live in McAlester! How hard was it to get into Salt lake? Do they pay for your flight? Sent from my iPhoneOn Jun 27, 2012, at 2:03 PM, Logan <mariaelogan@...> wrote:

We live in OKC, OK but take our daughter to Shriner's in Salt Lake City for casting. OKC Children's DOES NOT do EDF casting, they do not have the proper frame for it. They do Risser casting, just FYI. On Jun 27, 2012, at 1:37 PM, Green <fitnessjunkie26@...> wrote:

Does anyone know anything about shriners in shreveport, la or children's in Oklahoma?Sent from my iPhoneOn Jun 27, 2012, at 1:12 PM, "Amber Scholl" <amber@...> wrote:

Jenn,

We did not have to stay over night at the hospital but they did insist

that we stay close by. This was a change for them in the past year as

they are now charging insurance companies (if you have it). It worked

just fine for us, but my son also doesn't have any other issues but the

IS. We did go back the next morning to have a once over before flying

home that afternoon. No breathing issues but they do monitor his oxygen

levels closely since we live in NE & receive casts at SLC Shriners & the

elevation level is much higher then home. On a different note our peds

doc does insist that we come in when my son gets colds now as they don't

want it to get into his lungs...right now they have him doing some

breathing treatments (like I did as a kid with asthma) as a precaution

since he has a cold & a slight weasing. I'm glad that they do this since

I we really don't want to have to cut the cast off for something like that

early.

Amber

> Hi Abbey and Jenn,

>

> This is all new to me too. Olivia was just diagnosed with IS and we're

> in the process of scheduling her casting. We spoke with the doctor last

> night and he was telling us that for the first night of her cast she

> will be admitted to the hospital overnight for observation. Abbey, did

> you have to do this? How did it go? Did your daughter have any

> breathing issues? Thank you so much. I can tell this page will be a

> lifeline for us over the next few weeks. It's so nice to be speaking

> with parents who are in the same boat and understand what's going on.

> Thank you again!

>

>

>

>

>

>> >

>> > HI my name is Jenn & my 8 month old daughter Jude was recently

>> diagnosed with Infantile Scoliosis as of 6-18-12.

>> >

>> > As a baby she has been more than perfect. So when her father & I

>> noticed that her left side of her back near her ribs stuck out further

>> than her right we decided to take her to her pediatrician to be

>> examined. After the Dr did an examination he agreed that something was

>> not right and sent us for an Xray. Upon seeing that Xray we discovered

>> she has a C shaped curve in her spine that was indeed Infantile

>> Scoliosis and as a mother my heart sank.

>> >

>> > I immediately went home & googled as much information as I could

>> about this rare & terrifying diagnosis they had given me, now bear in

>> mind I didn't hear much after the dr showed me the X-Ray & told me he

>> was referring us to Children's Orthopedic Surgeon. We have her an

>> appointment scheduled for next month & I am just looking for some

>> advice, ANY advice as to how to proceed what questions to ask & so

>> forth so please send it my way!

>> >

>> > Thanks,

>> > Jenn

>> >

>>

>

>

>

=

=

[Guest guest]

,

Really? Where from? We live in Seward but I'm from Lincoln originally.

Where are you thinking of casting? Dr. H @ Children's or are you

traveling out of state? I have only met one other family from around here

they live in Columbus & also now go to SLC Shriner's.

Amber

> Interesting,

>

> We are also from NE. I will keep that in mind about the colds and

> whatnot.

>

>

>

>

>> >> >

>> >> > HI my name is Jenn & my 8 month old daughter Jude was recently

>> >> diagnosed with Infantile Scoliosis as of 6-18-12.

>> >> >

>> >> > As a baby she has been more than perfect. So when her father & I

>> >> noticed that her left side of her back near her ribs stuck out

>> further

>> >> than her right we decided to take her to her pediatrician to be

>> >> examined. After the Dr did an examination he agreed that something

>> was

>> >> not right and sent us for an Xray. Upon seeing that Xray we

>> discovered

>> >> she has a C shaped curve in her spine that was indeed Infantile

>> >> Scoliosis and as a mother my heart sank.

>> >> >

>> >> > I immediately went home & googled as much information as I could

>> >> about this rare & terrifying diagnosis they had given me, now bear in

>> >> mind I didn't hear much after the dr showed me the X-Ray & told me he

>> >> was referring us to Children's Orthopedic Surgeon. We have her an

>> >> appointment scheduled for next month & I am just looking for some

>> >> advice, ANY advice as to how to proceed what questions to ask & so

>> >> forth so please send it my way!

>> >> >

>> >> > Thanks,

>> >> > Jenn

>> >> >

>> >>

>> >

>> >

>> >

>>

>

>

>

[Guest guest]

Shreveport is a no go for casting. St Louis might be a possibility for you.Sent from my iPhoneOn Jun 27, 2012, at 12:37 PM, Green <fitnessjunkie26@...> wrote:

Does anyone know anything about shriners in shreveport, la or children's in Oklahoma?Sent from my iPhoneOn Jun 27, 2012, at 1:12 PM, "Amber Scholl" <amber@...> wrote:

Jenn,

We did not have to stay over night at the hospital but they did insist

that we stay close by. This was a change for them in the past year as

they are now charging insurance companies (if you have it). It worked

just fine for us, but my son also doesn't have any other issues but the

IS. We did go back the next morning to have a once over before flying

home that afternoon. No breathing issues but they do monitor his oxygen

levels closely since we live in NE & receive casts at SLC Shriners & the

elevation level is much higher then home. On a different note our peds

doc does insist that we come in when my son gets colds now as they don't

want it to get into his lungs...right now they have him doing some

breathing treatments (like I did as a kid with asthma) as a precaution

since he has a cold & a slight weasing. I'm glad that they do this since

I we really don't want to have to cut the cast off for something like that

early.

Amber

> Hi Abbey and Jenn,

>

> This is all new to me too. Olivia was just diagnosed with IS and we're

> in the process of scheduling her casting. We spoke with the doctor last

> night and he was telling us that for the first night of her cast she

> will be admitted to the hospital overnight for observation. Abbey, did

> you have to do this? How did it go? Did your daughter have any

> breathing issues? Thank you so much. I can tell this page will be a

> lifeline for us over the next few weeks. It's so nice to be speaking

> with parents who are in the same boat and understand what's going on.

> Thank you again!

>

>

>

>

>

>> >

>> > HI my name is Jenn & my 8 month old daughter Jude was recently

>> diagnosed with Infantile Scoliosis as of 6-18-12.

>> >

>> > As a baby she has been more than perfect. So when her father & I

>> noticed that her left side of her back near her ribs stuck out further

>> than her right we decided to take her to her pediatrician to be

>> examined. After the Dr did an examination he agreed that something was

>> not right and sent us for an Xray. Upon seeing that Xray we discovered

>> she has a C shaped curve in her spine that was indeed Infantile

>> Scoliosis and as a mother my heart sank.

>> >

>> > I immediately went home & googled as much information as I could

>> about this rare & terrifying diagnosis they had given me, now bear in

>> mind I didn't hear much after the dr showed me the X-Ray & told me he

>> was referring us to Children's Orthopedic Surgeon. We have her an

>> appointment scheduled for next month & I am just looking for some

>> advice, ANY advice as to how to proceed what questions to ask & so

>> forth so please send it my way!

>> >

>> > Thanks,

>> > Jenn

>> >

>>

>

>

>

TODAY(Beta) • =

[Guest guest]

How long did it take after your first appointment to find out if they are a casting candidate? If we are at a Shriners campus that doesn't offer casting & she's a candidate will they transfer her to a Shriners that does casting?Sent from my iPhoneOn Jun 27, 2012, at 7:34 PM, Tame Olson <dazies2001@...> wrote:

Shreveport is a no go for casting. St Louis might be a possibility for you.Sent from my iPhoneOn Jun 27, 2012, at 12:37 PM, Green <fitnessjunkie26@...> wrote:

Does anyone know anything about shriners in shreveport, la or children's in Oklahoma?Sent from my iPhoneOn Jun 27, 2012, at 1:12 PM, "Amber Scholl" <amber@...> wrote:

Jenn,

We did not have to stay over night at the hospital but they did insist

that we stay close by. This was a change for them in the past year as

they are now charging insurance companies (if you have it). It worked

just fine for us, but my son also doesn't have any other issues but the

IS. We did go back the next morning to have a once over before flying

home that afternoon. No breathing issues but they do monitor his oxygen

levels closely since we live in NE & receive casts at SLC Shriners & the

elevation level is much higher then home. On a different note our peds

doc does insist that we come in when my son gets colds now as they don't

want it to get into his lungs...right now they have him doing some

breathing treatments (like I did as a kid with asthma) as a precaution

since he has a cold & a slight weasing. I'm glad that they do this since

I we really don't want to have to cut the cast off for something like that

early.

Amber

> Hi Abbey and Jenn,

>

> This is all new to me too. Olivia was just diagnosed with IS and we're

> in the process of scheduling her casting. We spoke with the doctor last

> night and he was telling us that for the first night of her cast she

> will be admitted to the hospital overnight for observation. Abbey, did

> you have to do this? How did it go? Did your daughter have any

> breathing issues? Thank you so much. I can tell this page will be a

> lifeline for us over the next few weeks. It's so nice to be speaking

> with parents who are in the same boat and understand what's going on.

> Thank you again!

>

>

>

>

>

>> >

>> > HI my name is Jenn & my 8 month old daughter Jude was recently

>> diagnosed with Infantile Scoliosis as of 6-18-12.

>> >

>> > As a baby she has been more than perfect. So when her father & I

>> noticed that her left side of her back near her ribs stuck out further

>> than her right we decided to take her to her pediatrician to be

>> examined. After the Dr did an examination he agreed that something was

>> not right and sent us for an Xray. Upon seeing that Xray we discovered

>> she has a C shaped curve in her spine that was indeed Infantile

>> Scoliosis and as a mother my heart sank.

>> >

>> > I immediately went home & googled as much information as I could

>> about this rare & terrifying diagnosis they had given me, now bear in

>> mind I didn't hear much after the dr showed me the X-Ray & told me he

>> was referring us to Children's Orthopedic Surgeon. We have her an

>> appointment scheduled for next month & I am just looking for some

>> advice, ANY advice as to how to proceed what questions to ask & so

>> forth so please send it my way!

>> >

>> > Thanks,

>> > Jenn

>> >

>>

>

>

>

TODAY(Beta) • =

=

[Guest guest]

Ooops! NE (Nebraska) I thought that was NE (New England) we're from MA. :-/

> >> >> >

> >> >> > HI my name is Jenn & my 8 month old daughter Jude was recently

> >> >> diagnosed with Infantile Scoliosis as of 6-18-12.

> >> >> >

> >> >> > As a baby she has been more than perfect. So when her father & I

> >> >> noticed that her left side of her back near her ribs stuck out

> >> further

> >> >> than her right we decided to take her to her pediatrician to be

> >> >> examined. After the Dr did an examination he agreed that something

> >> was

> >> >> not right and sent us for an Xray. Upon seeing that Xray we

> >> discovered

> >> >> she has a C shaped curve in her spine that was indeed Infantile

> >> >> Scoliosis and as a mother my heart sank.

> >> >> >

> >> >> > I immediately went home & googled as much information as I could

> >> >> about this rare & terrifying diagnosis they had given me, now bear in

> >> >> mind I didn't hear much after the dr showed me the X-Ray & told me he

> >> >> was referring us to Children's Orthopedic Surgeon. We have her an

> >> >> appointment scheduled for next month & I am just looking for some

> >> >> advice, ANY advice as to how to proceed what questions to ask & so

> >> >> forth so please send it my way!

> >> >> >

> >> >> > Thanks,

> >> >> > Jenn

> >> >> >

> >> >>

> >> >

> >> >

> >> >

> >>

> >

> >

> >

>

[Guest guest]

If the scoliosis is congenital, what are the treatment options?Sent from my iPhoneOn Jun 29, 2012, at 7:21 AM, "G" <deznsw1230@...> wrote:

Ooops! NE (Nebraska) I thought that was NE (New England) we're from MA. :-/

> >> >> >

> >> >> > HI my name is Jenn & my 8 month old daughter Jude was recently

> >> >> diagnosed with Infantile Scoliosis as of 6-18-12.

> >> >> >

> >> >> > As a baby she has been more than perfect. So when her father & I

> >> >> noticed that her left side of her back near her ribs stuck out

> >> further

> >> >> than her right we decided to take her to her pediatrician to be

> >> >> examined. After the Dr did an examination he agreed that something

> >> was

> >> >> not right and sent us for an Xray. Upon seeing that Xray we

> >> discovered

> >> >> she has a C shaped curve in her spine that was indeed Infantile

> >> >> Scoliosis and as a mother my heart sank.

> >> >> >

> >> >> > I immediately went home & googled as much information as I could

> >> >> about this rare & terrifying diagnosis they had given me, now bear in

> >> >> mind I didn't hear much after the dr showed me the X-Ray & told me he

> >> >> was referring us to Children's Orthopedic Surgeon. We have her an

> >> >> appointment scheduled for next month & I am just looking for some

> >> >> advice, ANY advice as to how to proceed what questions to ask & so

> >> >> forth so please send it my way!

> >> >> >

> >> >> > Thanks,

> >> >> > Jenn

> >> >> >

> >> >>

> >> >

> >> >

> >> >

> >>

> >

> >

> >

>

=

[Guest guest]

My daughter, has Congenital Scoliosis. HER treatment has involved bracing and VEPTR Surgery. Other types of surgery may be called for. Like Progressive Infantile Scoliosis and Idiopathic Scoliosis no two cases are the same, so the treatment plan for each child will differ.In the case of my daughter, she wore a

modified TLSO brace with a headpiece that covered about 2/3 of her head. this was used, not so much for her spine, but her head because she was beginning to experience facial dysplacia due to her torticollis. 's scoliosis was/is caused by bone

malformation in that she has 2 hemivertabrae - one above and one below the curve in her spine. Typically, congenital scoliosis will involve some type of bone malformation, which is why casting and bracing will not cure the scoliosis but both can be used to maintain. Most children with congenital scoliosis will have to endure some type of surgery at some point. This can involve "growing rods", VEPTR, Harrington Rods, fusion and any number of other procedures. Bracing is often used to see if a curve is going to progress or stay the same. Again, all children are different, so please do not take this as the gospel.I would like to invite you to join us at the Congenital Scoliosis Support Group too. CongenitalScoliosisSupport/ Gail********************************************************My current location: The corner of mayhem, foolishness, and total insanity From: Green <fitnessjunkie26@...> "infantile scoliosis treatment " <infantile scoliosis treatment > Cc:

"infantile scoliosis treatment " <infantile scoliosis treatment > Sent: Friday, June 29, 2012 11:08 AM Subject: Re: Re: New to the group! 8 months old Diagnosed with Infantile Scoliosis

If the scoliosis is congenital, what are the treatment options?Sent from my iPhoneOn Jun 29, 2012, at 7:21 AM, "G" <deznsw1230@...> wrote:

Ooops! NE (Nebraska) I thought that was NE (New England) we're from MA. :-/

> >> >> >

> >> >> > HI my name is Jenn & my 8 month old daughter Jude was recently

> >> >> diagnosed with Infantile Scoliosis as of 6-18-12.

> >> >> >

> >> >> > As a baby she has been more than perfect. So when her father & I

> >> >> noticed that her left side of her back near her ribs stuck out

> >> further

> >> >> than her right we decided to take her to her pediatrician to be

> >> >> examined. After the Dr did an examination he agreed that something

> >> was

> >> >> not right and sent us for an Xray. Upon seeing that Xray we

> >> discovered

> >> >> she has a C shaped curve in her spine that was indeed Infantile

> >> >> Scoliosis and as a mother my heart sank.

> >> >> >

> >> >> > I immediately went home & googled as much information as I could

> >> >> about this rare & terrifying diagnosis they had given me, now bear in

> >> >> mind I didn't hear much after the dr showed me the X-Ray & told me he

> >> >> was referring us to Children's Orthopedic Surgeon. We have her an

> >> >> appointment scheduled for next month & I am just looking for some

> >> >> advice, ANY advice as to how to proceed what questions to ask & so

> >> >> forth so please send it my way!

> >> >> >

> >> >> > Thanks,

> >> >> > Jenn

> >> >> >

> >> >>

> >> >

> >> >

> >> >

> >>

> >

> >

> >

>

=

[Guest guest]

Excellent suggestion! ~And, read Graces Story on www.infantilescoliosis.org

HRH

> If the scoliosis is congenital, what are the treatment options?

>

> Sent from my iPhone

>

> On Jun 29, 2012, at 7:21 AM, " G " <deznsw1230@...> wrote:

>

>> Ooops! NE (Nebraska) I thought that was NE (New England) we're from MA.

>> :-/

>>

>>

>> > >> >> >

>> > >> >> > HI my name is Jenn & my 8 month old daughter Jude was recently

>> > >> >> diagnosed with Infantile Scoliosis as of 6-18-12.

>> > >> >> >

>> > >> >> > As a baby she has been more than perfect. So when her father &

>> I

>> > >> >> noticed that her left side of her back near her ribs stuck out

>> > >> further

>> > >> >> than her right we decided to take her to her pediatrician to be

>> > >> >> examined. After the Dr did an examination he agreed that

>> something

>> > >> was

>> > >> >> not right and sent us for an Xray. Upon seeing that Xray we

>> > >> discovered

>> > >> >> she has a C shaped curve in her spine that was indeed Infantile

>> > >> >> Scoliosis and as a mother my heart sank.

>> > >> >> >

>> > >> >> > I immediately went home & googled as much information as I

>> could

>> > >> >> about this rare & terrifying diagnosis they had given me, now

>> bear in

>> > >> >> mind I didn't hear much after the dr showed me the X-Ray & told

>> me he

>> > >> >> was referring us to Children's Orthopedic Surgeon. We have her

>> an

>> > >> >> appointment scheduled for next month & I am just looking for

>> some

>> > >> >> advice, ANY advice as to how to proceed what questions to ask &

>> so

>> > >> >> forth so please send it my way!

>> > >> >> >

>> > >> >> > Thanks,

>> > >> >> > Jenn

>> > >> >> >

>> > >> >>

>> > >> >

>> > >> >

>> > >> >

>> > >>

>> > >

>> > >

>> > >

>> >

>>

>>