New TLSO, need advise on casting

[Guest guest]

Hello,

I am a new member and have only posted a couple of times. I mostly

have been reading all of your posts and trying to gather

information. My Son is 19 months old and has a 60 degree curve. He

has been going to Shriners Tampa for the last year. His TLSO was

just completed yesterday and we now are trying to get him to adjust

to it.

Some issues:

He acts like he can not breath in it and takes very small breaths,

he will not move in it, that includes crawling, walking, rolling

over, eating, ect. He has worn it off and on for the last day. Is

this normal?

Also, I am not sure if we are on the right path. I have asked the

entire staff at Shriner Tampa about the serial casting and they have

given me nothing but negative about it. The made the brace for my

son on a risser table and the orthotist said that was as good of a

corrective brace he could possibly get. When I asked about the

serial casting he said that the serial casting cast and the TLSO

brace he made for my son would be the same. When they xrayed Finn in

the cast, he went down to 40 degrees and the orthotist said he was a

little diapointed because he thought the curve in the brace would be

less and that his spine is very rigid and his ribs are rotated.

Would the serial casting better correct this, especially with rib

rotation? I do not feel like I can wait 4 months till our next

follow up to see if this makes a differce. Any suggestions?

Thanks,

[Guest guest]

I absolutely would cast him if I was in your shoes. I am sorry & disappointed

to hear the negative feedback you have gotten from Tampa Shriners. The casting

on the AMIL table addresses the rotation which a traditional TLSO does not.

Also, if his brace does not have cutouts in the front it could cause ribcage

deformities. Dr. Khoury in AL may be closest to you although you would have to

see if your insurance would cover it. Dr. Staniskelis (SP???) at the SC

Shriners is another option. I know there is a place in Texas (Austin maybe?)

that is also doing Early Treatment. With a curve of that degree, I would try to

get him casted by a Mehta trained doctor ASAP. Time is of the essence with a

curve of that severity.

Best of luck to you .

Noelle (12-2-01)

Ian (8-15-04)

New TLSO, need advise on casting

Hello,

I am a new member and have only posted a couple of times. I mostly

have been reading all of your posts and trying to gather

information. My Son is 19 months old and has a 60 degree curve. He

has been going to Shriners Tampa for the last year. His TLSO was

just completed yesterday and we now are trying to get him to adjust

to it.

Some issues:

He acts like he can not breath in it and takes very small breaths,

he will not move in it, that includes crawling, walking, rolling

over, eating, ect. He has worn it off and on for the last day. Is

this normal?

Also, I am not sure if we are on the right path. I have asked the

entire staff at Shriner Tampa about the serial casting and they have

given me nothing but negative about it. The made the brace for my

son on a risser table and the orthotist said that was as good of a

corrective brace he could possibly get. When I asked about the

serial casting he said that the serial casting cast and the TLSO

brace he made for my son would be the same. When they xrayed Finn in

the cast, he went down to 40 degrees and the orthotist said he was a

little diapointed because he thought the curve in the brace would be

less and that his spine is very rigid and his ribs are rotated.

Would the serial casting better correct this, especially with rib

rotation? I do not feel like I can wait 4 months till our next

follow up to see if this makes a differce. Any suggestions?

Thanks,

[Guest guest]

I would stongly recommend that you look in the file section of the

website and read the articles written by the docs who have done the

serial casting. Very good info here. I would then forward copies of

your son's x-rays to them and get a second opinion on whether serial

casting would benefit him. My grandson, Devyn, has had serial casting

and is doing beautifully. He had 3 casts and now is in a brace. He

started at over 40 degrees and is now down to 8 degrees out of the

brace. He is treated at Children's Hospital in Denver by Dr. Mark

kson and has had wonderful care!! The staff is awesome. A second

opinion certainly cannot hurt and if you can travel to one of the

hospitals that over the serial casting I beleive your son will

benefit greatly!!!

Shara, grammy of Devyn 2 yrs, scoliosis and Chiari

>

> Hello,

>

> I am a new member and have only posted a couple of times. I mostly

> have been reading all of your posts and trying to gather

> information. My Son is 19 months old and has a 60 degree curve. He

> has been going to Shriners Tampa for the last year. His TLSO was

> just completed yesterday and we now are trying to get him to adjust

> to it.

>

> Some issues:

> He acts like he can not breath in it and takes very small breaths,

> he will not move in it, that includes crawling, walking, rolling

> over, eating, ect. He has worn it off and on for the last day. Is

> this normal?

>

> Also, I am not sure if we are on the right path. I have asked the

> entire staff at Shriner Tampa about the serial casting and they

have

> given me nothing but negative about it. The made the brace for my

> son on a risser table and the orthotist said that was as good of a

> corrective brace he could possibly get. When I asked about the

> serial casting he said that the serial casting cast and the TLSO

> brace he made for my son would be the same. When they xrayed Finn

in

> the cast, he went down to 40 degrees and the orthotist said he was

a

> little diapointed because he thought the curve in the brace would

be

> less and that his spine is very rigid and his ribs are rotated.

> Would the serial casting better correct this, especially with rib

> rotation? I do not feel like I can wait 4 months till our next

> follow up to see if this makes a differce. Any suggestions?

>

> Thanks,

>

>

[Guest guest]

,

Welcome to the group.

I would try your best to get a 2nd opinion. Your son could benefit from

casting. Sorry Shriner's Tampa does not feel that way. I am with you........I

can't see waiting 4 months. Act now!!

My son, , is treated at Texas ish Rite Hospital in Dallas, Texas. It

is like Shriner's.........where there is no cost for the services provided.

Although they are not trained in Ms. Mehta's ET, they are completely on board

for casting. And we have been blessed by having great results there.

As far as your son having trouble in the brace...........it sounds like it is

too tight. My son is in a brace now and does not have any problems with

breathing, eating, running and playing. Call his doctor. That just does not

sounds right.

Please let us know if you have any other questions.

Take care and keep us posted on your son.

Tasha

Mommy of twin boys- and 33 months

Fort Worth, Texas

teresamcsheffrey wrote:

Hello,

I am a new member and have only posted a couple of times. I mostly

have been reading all of your posts and trying to gather

information. My Son is 19 months old and has a 60 degree curve. He

has been going to Shriners Tampa for the last year. His TLSO was

just completed yesterday and we now are trying to get him to adjust

to it.

Some issues:

He acts like he can not breath in it and takes very small breaths,

he will not move in it, that includes crawling, walking, rolling

over, eating, ect. He has worn it off and on for the last day. Is

this normal?

Also, I am not sure if we are on the right path. I have asked the

entire staff at Shriner Tampa about the serial casting and they have

given me nothing but negative about it. The made the brace for my

son on a risser table and the orthotist said that was as good of a

corrective brace he could possibly get. When I asked about the

serial casting he said that the serial casting cast and the TLSO

brace he made for my son would be the same. When they xrayed Finn in

the cast, he went down to 40 degrees and the orthotist said he was a

little diapointed because he thought the curve in the brace would be

less and that his spine is very rigid and his ribs are rotated.

Would the serial casting better correct this, especially with rib

rotation? I do not feel like I can wait 4 months till our next

follow up to see if this makes a differce. Any suggestions?

Thanks,

---------------------------------

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

If I were you I would try and go to one of the shriners on the east

coast that does the casting and has attended the ETP's that

and Miss Mehta have done. The cast is permanent and they don't take

it off. It puts pressure on the spine constantly and also on the

ribs. The casts are made to also help correct the rotation. I can't

imagine sarting with a brace. My son Devyn is in a TSLO brace now but

was in casts for six months. He started with his curve over 40degrees

and 30degree rotation. He is now at 8degrees. He was at 10degrees

before they took his last cast off in October. I know that the brace

works for some kids but they have found that the casts are more

effective. I spoke with our doctor yesterday and he said the reason

the special table they use to cast works is because they put a

harness around the neck and the hips to pull the child as straight as

possible before they push on the spine, then they have pins that hold

the spine in place while they apply the plaster. He said if he had to

apply a cast on a regular riser table there would be know way to make

any promises on the correction. Sorry this is so long but wanted to

share some of the info I have recieved.

Rochelle mom to Devyn 2yrs

>

> Hello,

>

> I am a new member and have only posted a couple of times. I mostly

> have been reading all of your posts and trying to gather

> information. My Son is 19 months old and has a 60 degree curve. He

> has been going to Shriners Tampa for the last year. His TLSO was

> just completed yesterday and we now are trying to get him to adjust

> to it.

>

> Some issues:

> He acts like he can not breath in it and takes very small breaths,

> he will not move in it, that includes crawling, walking, rolling

> over, eating, ect. He has worn it off and on for the last day. Is

> this normal?

>

> Also, I am not sure if we are on the right path. I have asked the

> entire staff at Shriner Tampa about the serial casting and they

have

> given me nothing but negative about it. The made the brace for my

> son on a risser table and the orthotist said that was as good of a

> corrective brace he could possibly get. When I asked about the

> serial casting he said that the serial casting cast and the TLSO

> brace he made for my son would be the same. When they xrayed Finn

in

> the cast, he went down to 40 degrees and the orthotist said he was

a

> little diapointed because he thought the curve in the brace would

be

> less and that his spine is very rigid and his ribs are rotated.

> Would the serial casting better correct this, especially with rib

> rotation? I do not feel like I can wait 4 months till our next

> follow up to see if this makes a differce. Any suggestions?

>

> Thanks,

>

>

[Guest guest]

Sadly, it is their lack of experience and education in treating

infants/toddlers that is speaking volumes here.

I faced many physicians and experts who said the same thing, but you

know what? I don't fault them anymore. I know now that it's just

their lack of exposure to infantile progressive scoliosis. This is

such a tremendously rare condition and early treatment is still a

fairly new concept here in the states.

Even in my city, one of the leading Children's hospitals around the

country, they have never done it or heard of it. Another surgeon in

the same city, also world-reknowned for his cutting skills, gave us a

totally different prognosis/recommendation.

So, I'll tell you what I was told when I came here - find a casting

doctor - YESTERDAY. Time is of the essence. He needs this NOW. It

is the only thing that will CORRECT a curve and protect his precious

lungs and heart.

We will get through the whys at some other time (or you can read the

files here on the group). But, you have to trust the moms who have

been through it - even some of our doctors do not have the collective

wealth of knowledge here on this group because of the experience here

by so many of the parents going through it (or who have already come

through it with great success.)

It may be a struggle to GET there - to another city - but it is SOOO worth it!!!

Sandi

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

[Guest guest]

Sandi,

Thanks so much for the encouragement. After I wrote the post today, I decided

I couldn't wait another minute. I called the Shriners in Chicago ( probably

easiest to fly in and out of). The application person, , said that she

would pull all of Finn's records from Shriner Tampa and that Dr Sturn (?) would

review them, hopefully Monday. I have read so much from this group and so much

on my own that I just know that the TLSO brace is not our answer.

What really does suprise me is how little everyone seems to know about

Infantile Scoliosis. The correlation with Torticollis and Plagiocephaly seems

high to me. I wish someone, anyone would of said they thought he was developing

scoliosis. I knew at 7 months that his ribs were shifted to one side and his PT

and Pediatrician said it was muscle shift because of his torticollis and he also

used his right side more. Does anyone have statistics on how many kids yearly

develop infantile scoliosis?

This site is wonderful. I am so happy I found it and you all are so wonderful

and sharing.

What is the reaction of the child when they wake up and discover they have a

cast on for the first time? How long does it take to adjust?

Thanks,

" *\\o/* San *\\o/* " wrote:

Sadly, it is their lack of experience and education in treating

infants/toddlers that is speaking volumes here.

I faced many physicians and experts who said the same thing, but you

know what? I don't fault them anymore. I know now that it's just

their lack of exposure to infantile progressive scoliosis. This is

such a tremendously rare condition and early treatment is still a

fairly new concept here in the states.

Even in my city, one of the leading Children's hospitals around the

country, they have never done it or heard of it. Another surgeon in

the same city, also world-reknowned for his cutting skills, gave us a

totally different prognosis/recommendation.

So, I'll tell you what I was told when I came here - find a casting

doctor - YESTERDAY. Time is of the essence. He needs this NOW. It

is the only thing that will CORRECT a curve and protect his precious

lungs and heart.

We will get through the whys at some other time (or you can read the

files here on the group). But, you have to trust the moms who have

been through it - even some of our doctors do not have the collective

wealth of knowledge here on this group because of the experience here

by so many of the parents going through it (or who have already come

through it with great success.)

It may be a struggle to GET there - to another city - but it is SOOO worth it!!!

Sandi

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

---------------------------------

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Hi ,

Welcome! It sounds like you've just mentally been through what I went

through just recently. Although my son is in a different situation in

that his scoliosis is not idiopathic, I still had to go through the

process of figuring things out and coming up with the conclusion that

ET with a " Mehta " style cast is the best way to go...and the parents

on here are so helpful (Sandi and other moms helped me too)!

My son, , is scheduled to get his first cast this week, Tuesday,

and I'm anxious to see how he does. Now that you've entered the

'casting' world, I'm sure you'll have tons of questions, as I did.

Just ask away and you're questions will be answered...from pre-op to

post-op to diapering...everything. Rather than feeling stressed about

Tuesday, I know that I have this support group to help me with any

problems I encounter. Thanks Group!!

I'm glad to hear that you've called Chicago - that's awesome!

-

* Lake Elsinore, CA, mom to , 16 m.o. diagnosed with

neuroblastoma at age 2.5 months, status/post 8 cycles chemotherapy and

chest mass excision at San Diego Children's, in remission. Now with

thoracic scoliosis, 63 degrees, T4-T5, kyphosis, rotation (number

unknown), first cast scheduled Jan. 8 with Dr. Kishan at Loma .

> Sadly, it is their lack of experience and education in

treating

> infants/toddlers that is speaking volumes here.

>

> I faced many physicians and experts who said the same thing, but you

> know what? I don't fault them anymore. I know now that it's just

> their lack of exposure to infantile progressive scoliosis. This is

> such a tremendously rare condition and early treatment is still a

> fairly new concept here in the states.

>

> Even in my city, one of the leading Children's hospitals around the

> country, they have never done it or heard of it. Another surgeon in

> the same city, also world-reknowned for his cutting skills, gave us a

> totally different prognosis/recommendation.

>

> So, I'll tell you what I was told when I came here - find a casting

> doctor - YESTERDAY. Time is of the essence. He needs this NOW. It

> is the only thing that will CORRECT a curve and protect his precious

> lungs and heart.

>

> We will get through the whys at some other time (or you can read the

> files here on the group). But, you have to trust the moms who have

> been through it - even some of our doctors do not have the collective

> wealth of knowledge here on this group because of the experience here

> by so many of the parents going through it (or who have already come

> through it with great success.)

>

> It may be a struggle to GET there - to another city - but it is SOOO

worth it!!!

>

> Sandi

>

> --

> Mom to Madison, Skylar, on, Piper, & - diagnosed with

> infantile scoliosis at 10 months with a 70° right thoracic curve.

> Currently undergoing serial casting.

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

>

[Guest guest]

The first time devyn woke up with the cast on he was pretty mad.

I think it was a combination of having the cast and the anesthesia

that made him a little loopy and not knowing where he was. After

about in hour after he woke up and was finally able to walk again he

realized the cast wasn't going anywhere he was fine. the first week

was a little rough getting used to it. He could not sit up on the

floor or bend over at first. But after some time he figured out how

to manuever. He also had a rough time sleeping at first. like I said

it took him about a week to adjust fully, afer that it was just a

part of him. Hope this helps.

Rochelle

> Sadly, it is their lack of experience and education in

treating

> infants/toddlers that is speaking volumes here.

>

> I faced many physicians and experts who said the same thing, but you

> know what? I don't fault them anymore. I know now that it's just

> their lack of exposure to infantile progressive scoliosis. This is

> such a tremendously rare condition and early treatment is still a

> fairly new concept here in the states.

>

> Even in my city, one of the leading Children's hospitals around the

> country, they have never done it or heard of it. Another surgeon in

> the same city, also world-reknowned for his cutting skills, gave us

a

> totally different prognosis/recommendation.

>

> So, I'll tell you what I was told when I came here - find a casting

> doctor - YESTERDAY. Time is of the essence. He needs this NOW. It

> is the only thing that will CORRECT a curve and protect his precious

> lungs and heart.

>

> We will get through the whys at some other time (or you can read the

> files here on the group). But, you have to trust the moms who have

> been through it - even some of our doctors do not have the

collective

> wealth of knowledge here on this group because of the experience

here

> by so many of the parents going through it (or who have already come

> through it with great success.)

>

> It may be a struggle to GET there - to another city - but it is

SOOO worth it!!!

>

> Sandi

>

> --

> Mom to Madison, Skylar, on, Piper, & - diagnosed with

> infantile scoliosis at 10 months with a 70° right thoracic curve.

> Currently undergoing serial casting.

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

>

[Guest guest]

,

Hi, my name is Hansen and I just wanted to let you know you

have made the right decision getting a second opinion and fast! My

daughter Lily was casted for the first time when she was 17 months old

and I wish I would have done it sooner still. She also had

plagiocephily and wore a helmet from about 8 months to 13 months and

that was corrected. She has dip dyplaisia as well but we have only

needed to brace for that. She had around a 50 degree curve when we

first casted and she is now 3 1/2 years old in a brace holding at 6

degrees. If we would have listened to the first two doctors we saw at

home I feel our story would be much different than it is. It is a

long road casting but well worth the trip. They adjust so fast, Lily

never even realized she had a cast on. Good Luck and keep us updated.

> Sadly, it is their lack of experience and education in

treating

> infants/toddlers that is speaking volumes here.

>

> I faced many physicians and experts who said the same thing, but you

> know what? I don't fault them anymore. I know now that it's just

> their lack of exposure to infantile progressive scoliosis. This is

> such a tremendously rare condition and early treatment is still a

> fairly new concept here in the states.

>

> Even in my city, one of the leading Children's hospitals around the

> country, they have never done it or heard of it. Another surgeon in

> the same city, also world-reknowned for his cutting skills, gave us a

> totally different prognosis/recommendation.

>

> So, I'll tell you what I was told when I came here - find a casting

> doctor - YESTERDAY. Time is of the essence. He needs this NOW. It

> is the only thing that will CORRECT a curve and protect his precious

> lungs and heart.

>

> We will get through the whys at some other time (or you can read the

> files here on the group). But, you have to trust the moms who have

> been through it - even some of our doctors do not have the collective

> wealth of knowledge here on this group because of the experience here

> by so many of the parents going through it (or who have already come

> through it with great success.)

>

> It may be a struggle to GET there - to another city - but it is SOOO

worth it!!!

>

> Sandi

>

> --

> Mom to Madison, Skylar, on, Piper, & - diagnosed with

> infantile scoliosis at 10 months with a 70° right thoracic curve.

> Currently undergoing serial casting.

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

>

[Guest guest]

Yay! We're Chicago patients, too

Cree is Dr. Sturm's right hand woman. You'll get to know

VERY well. In fact, you may want to call on Monday and leave

her a message to let her know to watch for your application and see if

they can get you in as quickly as possible for the initial

consultation. Dr. Sturm is the chief of staff and very good at what

he does - not only that, but he's also a really compassionate,

approachable human being and we just love him. He always listens to

our concerns and discusses options with us versus telling us what to

do. A huge change from the other experts we saw.

There is definitely a huge tort/plagio link. We were told there

wasn't as well, but talking wtih the other moms here I see it myself.

Jack was helmeted for a few months and we spoke with Miss Mehta (the

physician who developed this early treatment method for

infants/toddlers with the strategic cutouts to prevent chest wall

deformities the way old school Risser casts would and also correct the

rotation of the spine) and she said there is ABSOLUTELY a link and

that his head would resolve on its own. It definitely has.

Jack's curve was 70° upon diagnosis and his first symptoms were

noticed around 10 months - that same shifting of the weight (sitting

on his left hip a lot), crawl with a dragging of his leg, and the

positional plagiocephaly. The local children's hospital seemed to

think they were unrelated. We know now that they are not.

I don't know the statistics, but I do remember that it is an extremely

rare condition. 1 in 333 people in the US have scoliosis. Of every

1,000 children, 3 to 5 develop spinal curves that are considered large

enough to need treatment. There's a huge jump there between the number

of people in the US versus the number of children, and then again the

number of infants who have large enough curves that it is diagnosed

and then again needs treatment. I remember reading the statistic

around 1 in 100,000 of infants in the US and then of that 10% being

over 50° but I can't find where it was now. It was in those early

nights of diagnosis, googling and googling and googling.

The first cast is the hardest. In Chicago the babies are given Versed

(a sedative and amnesiac) in the pre-op holding room. Once it kicks

in, the anesthesiologist usually comes back to get the babies and we

say goodbye. Jack cried one out of three times so far and he has a

MAJOR separation anxiety going on (and fear of anyone in scrubs). So,

that's pretty good for him. (And he only kind of whined.)

When they wake up in post-op, they are groggy and out of it, usually.

Jack is combative - he thrashes and fights. We were told by several

friends and relatives in the healthcare industry that this is totally

normal from the anesthesia medicine. He usually wants to nurse since

he's not been able to eat all night, and then sleeps off the medicine

for about an hour. It's getting easier as he gets older, though. At

12 months (his first cast) he didn't understand and was really

disoriented. Now that he's almost 18 months, he's starting to " get "

it a bit more and is less cranky in the mornings (though, still very

loud!) when he can't nurse.

The first cast took about 7-10 days to get used to. He couldn't sit

in it or get from sitting to standing. He couldn't move his head from

left to right as well or balance. He also couldn't pick things up and

bring them to his mouth the way he had been able to in the past. But,

he took his first steps the night before his first cast and within a

month he was walking on his own. It's hard because they can't catch

themselves well at first (and we have laminate flooring so it's a hard

fall) so I used the pack and play a lot with padded corners. If he

fell in there, it was much easier than if he had fallen on the floor.

He seemed to have a lot of security in there, sitting next to me and

playing. He also liked his exersaucer (and I considered a Jumparoo)

but he was pretty tall at that age and right at the height/weight

limits.

Now? He can do anything. He's into everything - can run, climb

(oy!), jump, gets into everything. He's a busy boy. His curve is now

down to 22° in this cast and it was 40-something out of the last cast

- so we're getting some really really amazing results already! We are

doing our follow-up x-rays here in the next week or so, I think, then

they're re-applying a fourth cast based on how this one is holding -

either at 6 weeks out or 2 months out (hoping we can stretch it since

we got good results last time, per Dr. Sturm).

Oh - one word of advice - when you book, ask if you can go through

same day surgery. The hospital doesn't have room for parents and if

you're admitted it's a bit of a pain in the butt. (All rooms

downstairs are shared rooms and that gets VERY tricky with a grumpy

baby who can't eat and post-anesthesia when they're tired and being

woken up by an obnoxious 8 year old next to you!) Same day is SO much

better and you're right there by the operating room where they do the

casting.

I'll send you an invitation to my blog. If you go back to August,

that's when our first cast was. There are countless pictures of our

whole journey through this and maybe our experience will help prepare

you a little for what is to come.

Okay - sorry for the novel - let me know if I can do anything else or

answer any questions and welcome to the family!

Sandi &

[Guest guest]

-- I'm so glad you've decided to proactive on this. Even

though its a lot to go through I know you will not regret that you

did this for Finn.It is absolutely worth everything you have to go

through!!! My grandson, Devyn, is doing beautifully. I hate to think

what his life would have been like later on if my daughter had not

found this group and gotten him the care he needs. The first ortho he

saw wanted to " wait and see. " His pediatrician also didn't buy

the " wait and see " either.

This group is wonderful support for your journey. All of the parents

on here are willing to help in any way they can.

Now, as mentioned the other day we absolutely need to spread

the word so that ALL kids with this disorder can be treated properly

so they will NOT end up where Olivia is now!!! I am doing what I can

here in Grand Junction, Colorado by contacting the hospitals and the

doctors and trying to set up meetings where I can show them the ISOP

tape and hand out information on Dr. Mehta's early treatment. I know

that most of you parents have your hands full dealing with all that

goes along with this diagnosis, but perhaps you have family members

(even those that live somewhere else) who could help spread the word.

If more physicians were aware of just how well this treatment does

work I think more and more kids could be referred and more and more

physicians and hospitals would be willing to learn how to do it.

If you're interested in doing something along these lines please let

me know. knows what I am trying to accomplish and I'm sure

would love to have more people doing this. Perhaps we can set up

a " speaker's beureau " so that we can present the necessary

information to the health care community.

Thanks for listening.

Shara, Grammy to Devyn, 2 years scolisis and Chiari

-- In infantile_scoliosis , McSheffrey

wrote:

>

> Sandi,

>

> Thanks so much for the encouragement. After I wrote the post

today, I decided I couldn't wait another minute. I called the

Shriners in Chicago ( probably easiest to fly in and out of). The

application person, , said that she would pull all of Finn's

records from Shriner Tampa and that Dr Sturn (?) would review them,

hopefully Monday. I have read so much from this group and so much on

my own that I just know that the TLSO brace is not our answer.

>

> What really does suprise me is how little everyone seems to know

about Infantile Scoliosis. The correlation with Torticollis and

Plagiocephaly seems high to me. I wish someone, anyone would of said

they thought he was developing scoliosis. I knew at 7 months that his

ribs were shifted to one side and his PT and Pediatrician said it was

muscle shift because of his torticollis and he also used his right

side more. Does anyone have statistics on how many kids yearly

develop infantile scoliosis?

>

> This site is wonderful. I am so happy I found it and you all are

so wonderful and sharing.

>

> What is the reaction of the child when they wake up and discover

they have a cast on for the first time? How long does it take to

adjust?

>

> Thanks,

>

>

> " *\\o/* San *\\o/* " wrote:

> Sadly, it is their lack of experience and education in

treating

> infants/toddlers that is speaking volumes here.

>

> I faced many physicians and experts who said the same thing, but you

> know what? I don't fault them anymore. I know now that it's just

> their lack of exposure to infantile progressive scoliosis. This is

> such a tremendously rare condition and early treatment is still a

> fairly new concept here in the states.

>

> Even in my city, one of the leading Children's hospitals around the

> country, they have never done it or heard of it. Another surgeon in

> the same city, also world-reknowned for his cutting skills, gave us

a

> totally different prognosis/recommendation.

>

> So, I'll tell you what I was told when I came here - find a casting

> doctor - YESTERDAY. Time is of the essence. He needs this NOW. It

> is the only thing that will CORRECT a curve and protect his precious

> lungs and heart.

>

> We will get through the whys at some other time (or you can read the

> files here on the group). But, you have to trust the moms who have

> been through it - even some of our doctors do not have the

collective

> wealth of knowledge here on this group because of the experience

here

> by so many of the parents going through it (or who have already come

> through it with great success.)

>

> It may be a struggle to GET there - to another city - but it is

SOOO worth it!!!

>

> Sandi

>

> --

> Mom to Madison, Skylar, on, Piper, & - diagnosed with

> infantile scoliosis at 10 months with a 70° right thoracic curve.

> Currently undergoing serial casting.

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

>

[Guest guest]

Hi Shara,

I do have my hands full but I really believe that the word needs to be spread.

As I said in a previous posting, there is certainly not enough education out

there for PT's and Pediatricians that are treating the " earlier " stages of this

such as torticollis and plagiocephaly.Finn has been in PT since he was a couple

of months old and he has been seen by many health care professionals. He was not

diagnosed with Scoliosis until he went to Shriners Tampa in May of 2007 with a

40 degree curve. At his next follow up his curve was 60 degrees.

Has anyone ever presented the ET method to Shriners in Tampa? I know they have

heard of it because I discussed it with them. Some of the comments were

unfavorable but they were not from the people that would be the decision makers.

I know I am only just getting started with this but is there something I could

do? Present to them?

Shara wrote:

-- I'm so glad you've decided to proactive on this. Even

though its a lot to go through I know you will not regret that you

did this for Finn.It is absolutely worth everything you have to go

through!!! My grandson, Devyn, is doing beautifully. I hate to think

what his life would have been like later on if my daughter had not

found this group and gotten him the care he needs. The first ortho he

saw wanted to " wait and see. " His pediatrician also didn't buy

the " wait and see " either.

This group is wonderful support for your journey. All of the parents

on here are willing to help in any way they can.

Now, as mentioned the other day we absolutely need to spread

the word so that ALL kids with this disorder can be treated properly

so they will NOT end up where Olivia is now!!! I am doing what I can

here in Grand Junction, Colorado by contacting the hospitals and the

doctors and trying to set up meetings where I can show them the ISOP

tape and hand out information on Dr. Mehta's early treatment. I know

that most of you parents have your hands full dealing with all that

goes along with this diagnosis, but perhaps you have family members

(even those that live somewhere else) who could help spread the word.

If more physicians were aware of just how well this treatment does

work I think more and more kids could be referred and more and more

physicians and hospitals would be willing to learn how to do it.

If you're interested in doing something along these lines please let

me know. knows what I am trying to accomplish and I'm sure

would love to have more people doing this. Perhaps we can set up

a " speaker's beureau " so that we can present the necessary

information to the health care community.

Thanks for listening.

Shara, Grammy to Devyn, 2 years scolisis and Chiari

-- In infantile_scoliosis , McSheffrey

wrote:

>

> Sandi,

>

> Thanks so much for the encouragement. After I wrote the post

today, I decided I couldn't wait another minute. I called the

Shriners in Chicago ( probably easiest to fly in and out of). The

application person, , said that she would pull all of Finn's

records from Shriner Tampa and that Dr Sturn (?) would review them,

hopefully Monday. I have read so much from this group and so much on

my own that I just know that the TLSO brace is not our answer.

>

> What really does suprise me is how little everyone seems to know

about Infantile Scoliosis. The correlation with Torticollis and

Plagiocephaly seems high to me. I wish someone, anyone would of said

they thought he was developing scoliosis. I knew at 7 months that his

ribs were shifted to one side and his PT and Pediatrician said it was

muscle shift because of his torticollis and he also used his right

side more. Does anyone have statistics on how many kids yearly

develop infantile scoliosis?

>

> This site is wonderful. I am so happy I found it and you all are

so wonderful and sharing.

>

> What is the reaction of the child when they wake up and discover

they have a cast on for the first time? How long does it take to

adjust?

>

> Thanks,

>

>

> " *\\o/* San *\\o/* " wrote:

> Sadly, it is their lack of experience and education in

treating

> infants/toddlers that is speaking volumes here.

>

> I faced many physicians and experts who said the same thing, but you

> know what? I don't fault them anymore. I know now that it's just

> their lack of exposure to infantile progressive scoliosis. This is

> such a tremendously rare condition and early treatment is still a

> fairly new concept here in the states.

>

> Even in my city, one of the leading Children's hospitals around the

> country, they have never done it or heard of it. Another surgeon in

> the same city, also world-reknowned for his cutting skills, gave us

a

> totally different prognosis/recommendation.

>

> So, I'll tell you what I was told when I came here - find a casting

> doctor - YESTERDAY. Time is of the essence. He needs this NOW. It

> is the only thing that will CORRECT a curve and protect his precious

> lungs and heart.

>

> We will get through the whys at some other time (or you can read the

> files here on the group). But, you have to trust the moms who have

> been through it - even some of our doctors do not have the

collective

> wealth of knowledge here on this group because of the experience

here

> by so many of the parents going through it (or who have already come

> through it with great success.)

>

> It may be a struggle to GET there - to another city - but it is

SOOO worth it!!!

>

> Sandi

>

> --

> Mom to Madison, Skylar, on, Piper, & - diagnosed with

> infantile scoliosis at 10 months with a 70° right thoracic curve.

> Currently undergoing serial casting.

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

>

[Guest guest]

Sandi,

Thank you so much for the information and sharing your blog. Your family is

beautiful.

I am anxious to here back from Chicago. What if they deny him? Is there any

reason they would? He has been diagnosed with idiopathic infantile scoliosis. He

has had two MRI's and there are not any other spine issues. He has a horizontal

gaze palsy (cranial nerve 6 issues) and some slightly lower tone on his left

side and of course the plagiocephaly and torticollis . I think the scoliosis is

related to the tort and plagio. Is 's torticollis completely resolved?

Finn has rotation but prefers to hold his head to the side when sitting, tired

or concentrating.Shriners Tampa ARNP from our last visit said he does it because

of the scoliosis. She said it would improve in the brace, but in the brace he

will not pick his head up at all. Should I even try to break in the brace or

wait to hear back from Shriners? How long did it take for you to get your first

appointment?

Sorry for all the questions.

Thanks for everything.

" *\\o/* San *\\o/* " wrote:

Yay! We're Chicago patients, too

Cree is Dr. Sturm's right hand woman. You'll get to know

VERY well. In fact, you may want to call on Monday and leave

her a message to let her know to watch for your application and see if

they can get you in as quickly as possible for the initial

consultation. Dr. Sturm is the chief of staff and very good at what

he does - not only that, but he's also a really compassionate,

approachable human being and we just love him. He always listens to

our concerns and discusses options with us versus telling us what to

do. A huge change from the other experts we saw.

There is definitely a huge tort/plagio link. We were told there

wasn't as well, but talking wtih the other moms here I see it myself.

Jack was helmeted for a few months and we spoke with Miss Mehta (the

physician who developed this early treatment method for

infants/toddlers with the strategic cutouts to prevent chest wall

deformities the way old school Risser casts would and also correct the

rotation of the spine) and she said there is ABSOLUTELY a link and

that his head would resolve on its own. It definitely has.

Jack's curve was 70° upon diagnosis and his first symptoms were

noticed around 10 months - that same shifting of the weight (sitting

on his left hip a lot), crawl with a dragging of his leg, and the

positional plagiocephaly. The local children's hospital seemed to

think they were unrelated. We know now that they are not.

I don't know the statistics, but I do remember that it is an extremely

rare condition. 1 in 333 people in the US have scoliosis. Of every

1,000 children, 3 to 5 develop spinal curves that are considered large

enough to need treatment. There's a huge jump there between the number

of people in the US versus the number of children, and then again the

number of infants who have large enough curves that it is diagnosed

and then again needs treatment. I remember reading the statistic

around 1 in 100,000 of infants in the US and then of that 10% being

over 50° but I can't find where it was now. It was in those early

nights of diagnosis, googling and googling and googling.

The first cast is the hardest. In Chicago the babies are given Versed

(a sedative and amnesiac) in the pre-op holding room. Once it kicks

in, the anesthesiologist usually comes back to get the babies and we

say goodbye. Jack cried one out of three times so far and he has a

MAJOR separation anxiety going on (and fear of anyone in scrubs). So,

that's pretty good for him. (And he only kind of whined.)

When they wake up in post-op, they are groggy and out of it, usually.

Jack is combative - he thrashes and fights. We were told by several

friends and relatives in the healthcare industry that this is totally

normal from the anesthesia medicine. He usually wants to nurse since

he's not been able to eat all night, and then sleeps off the medicine

for about an hour. It's getting easier as he gets older, though. At

12 months (his first cast) he didn't understand and was really

disoriented. Now that he's almost 18 months, he's starting to " get "

it a bit more and is less cranky in the mornings (though, still very

loud!) when he can't nurse.

The first cast took about 7-10 days to get used to. He couldn't sit

in it or get from sitting to standing. He couldn't move his head from

left to right as well or balance. He also couldn't pick things up and

bring them to his mouth the way he had been able to in the past. But,

he took his first steps the night before his first cast and within a

month he was walking on his own. It's hard because they can't catch

themselves well at first (and we have laminate flooring so it's a hard

fall) so I used the pack and play a lot with padded corners. If he

fell in there, it was much easier than if he had fallen on the floor.

He seemed to have a lot of security in there, sitting next to me and

playing. He also liked his exersaucer (and I considered a Jumparoo)

but he was pretty tall at that age and right at the height/weight

limits.

Now? He can do anything. He's into everything - can run, climb

(oy!), jump, gets into everything. He's a busy boy. His curve is now

down to 22° in this cast and it was 40-something out of the last cast

- so we're getting some really really amazing results already! We are

doing our follow-up x-rays here in the next week or so, I think, then

they're re-applying a fourth cast based on how this one is holding -

either at 6 weeks out or 2 months out (hoping we can stretch it since

we got good results last time, per Dr. Sturm).

Oh - one word of advice - when you book, ask if you can go through

same day surgery. The hospital doesn't have room for parents and if

you're admitted it's a bit of a pain in the butt. (All rooms

downstairs are shared rooms and that gets VERY tricky with a grumpy

baby who can't eat and post-anesthesia when they're tired and being

woken up by an obnoxious 8 year old next to you!) Same day is SO much

better and you're right there by the operating room where they do the

casting.

I'll send you an invitation to my blog. If you go back to August,

that's when our first cast was. There are countless pictures of our

whole journey through this and maybe our experience will help prepare

you a little for what is to come.

Okay - sorry for the novel - let me know if I can do anything else or

answer any questions and welcome to the family!

Sandi &

---------------------------------

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

You're right, there isnot enough info out there for the PT's and Peds... I

presented the information to Evan;'s PT and Ped as well as all the ortho's we

met.

After the fundraiser, it's amazing to say, but there were several docs from

his Pediatrics office who re-located and in their practice have come across

several kids w/progressive infantile scoliosis and were able to find it,

diagnose it and then send them to an appropriate hospital for treatment!!!!

It all starts w/just one conversation...you'd be amazed to hear some of

's stories from when ISOP was just beginning. Since ET is still so new to

the orthopedic community, ISOP solely relies on parents to help spread the

word/raise money... I say it's the least we can all do as parents, since we've

all been given so much!

good luck!

and Evan

McSheffrey wrote:

Hi Shara,

I do have my hands full but I really believe that the word needs to be spread.

As I said in a previous posting, there is certainly not enough education out

there for PT's and Pediatricians that are treating the " earlier " stages of this

such as torticollis and plagiocephaly.Finn has been in PT since he was a couple

of months old and he has been seen by many health care professionals. He was not

diagnosed with Scoliosis until he went to Shriners Tampa in May of 2007 with a

40 degree curve. At his next follow up his curve was 60 degrees.

Has anyone ever presented the ET method to Shriners in Tampa? I know they have

heard of it because I discussed it with them. Some of the comments were

unfavorable but they were not from the people that would be the decision makers.

I know I am only just getting started with this but is there something I could

do? Present to them?

Shara wrote:

-- I'm so glad you've decided to proactive on this. Even

though its a lot to go through I know you will not regret that you

did this for Finn.It is absolutely worth everything you have to go

through!!! My grandson, Devyn, is doing beautifully. I hate to think

what his life would have been like later on if my daughter had not

found this group and gotten him the care he needs. The first ortho he

saw wanted to " wait and see. " His pediatrician also didn't buy

the " wait and see " either.

This group is wonderful support for your journey. All of the parents

on here are willing to help in any way they can.

Now, as mentioned the other day we absolutely need to spread

the word so that ALL kids with this disorder can be treated properly

so they will NOT end up where Olivia is now!!! I am doing what I can

here in Grand Junction, Colorado by contacting the hospitals and the

doctors and trying to set up meetings where I can show them the ISOP

tape and hand out information on Dr. Mehta's early treatment. I know

that most of you parents have your hands full dealing with all that

goes along with this diagnosis, but perhaps you have family members

(even those that live somewhere else) who could help spread the word.

If more physicians were aware of just how well this treatment does

work I think more and more kids could be referred and more and more

physicians and hospitals would be willing to learn how to do it.

If you're interested in doing something along these lines please let

me know. knows what I am trying to accomplish and I'm sure

would love to have more people doing this. Perhaps we can set up

a " speaker's beureau " so that we can present the necessary

information to the health care community.

Thanks for listening.

Shara, Grammy to Devyn, 2 years scolisis and Chiari

-- In infantile_scoliosis , McSheffrey

wrote:

>

> Sandi,

>

> Thanks so much for the encouragement. After I wrote the post

today, I decided I couldn't wait another minute. I called the

Shriners in Chicago ( probably easiest to fly in and out of). The

application person, , said that she would pull all of Finn's

records from Shriner Tampa and that Dr Sturn (?) would review them,

hopefully Monday. I have read so much from this group and so much on

my own that I just know that the TLSO brace is not our answer.

>

> What really does suprise me is how little everyone seems to know

about Infantile Scoliosis. The correlation with Torticollis and

Plagiocephaly seems high to me. I wish someone, anyone would of said

they thought he was developing scoliosis. I knew at 7 months that his

ribs were shifted to one side and his PT and Pediatrician said it was

muscle shift because of his torticollis and he also used his right

side more. Does anyone have statistics on how many kids yearly

develop infantile scoliosis?

>

> This site is wonderful. I am so happy I found it and you all are

so wonderful and sharing.

>

> What is the reaction of the child when they wake up and discover

they have a cast on for the first time? How long does it take to

adjust?

>

> Thanks,

>

>

> " *\\o/* San *\\o/* " wrote:

> Sadly, it is their lack of experience and education in

treating

> infants/toddlers that is speaking volumes here.

>

> I faced many physicians and experts who said the same thing, but you

> know what? I don't fault them anymore. I know now that it's just

> their lack of exposure to infantile progressive scoliosis. This is

> such a tremendously rare condition and early treatment is still a

> fairly new concept here in the states.

>

> Even in my city, one of the leading Children's hospitals around the

> country, they have never done it or heard of it. Another surgeon in

> the same city, also world-reknowned for his cutting skills, gave us

a

> totally different prognosis/recommendation.

>

> So, I'll tell you what I was told when I came here - find a casting

> doctor - YESTERDAY. Time is of the essence. He needs this NOW. It

> is the only thing that will CORRECT a curve and protect his precious

> lungs and heart.

>

> We will get through the whys at some other time (or you can read the

> files here on the group). But, you have to trust the moms who have

> been through it - even some of our doctors do not have the

collective

> wealth of knowledge here on this group because of the experience

here

> by so many of the parents going through it (or who have already come

> through it with great success.)

>

> It may be a struggle to GET there - to another city - but it is

SOOO worth it!!!

>

> Sandi

>

> --

> Mom to Madison, Skylar, on, Piper, & - diagnosed with

> infantile scoliosis at 10 months with a 70° right thoracic curve.

> Currently undergoing serial casting.

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

>

[Guest guest]

Thanks for the response so far. As far as fund raising you do need to

contact and find out exactly how to do it. I was a volunteer

with the Make-A-Wish Foundation for 15 years (my 14-year-old neice

died from cancer in 1993)before becoming involved with ISOP. Of

course, anyone can donate at any time, however, as far as fundraisers

for ISOP specifically you need to set that up with . I am sure

there are some regulations as far as using the ISOP name, etc. And

you have to be very careful about giving out any information about

specific children due to all of the privacy issues so please check

with first.

I figured if I can do presentations to a number of docs and PAs at

the same time it would start them talking together about it. If I

can't manage to get that done, then I'll go to each office and do the

same thing. I also want to include family practice docs because a lot

of times they are the ones who see this first as well as

pediatricians and ortho docs. The population of the western slope of

Colorado is very spread out with a lot of very small communities. My

hope is to be able to provide information for ALL of the physicians

on this side of the state, and including some areas in Utah. There

are so many who really don't know about it. In fact, even though

Devyn's pediatrician is absolutely awesome she had never seen a

curvature as severe as Devyn's and she also had no idea what Chiari

was either(neither did the radiologist who read the MRI)and had it

not been for her referring Devyn to Children's he would not be where

is he now.

This is just too important and doctors need to know what can be

accomplished with early treatment. Hopefully we can build a good

support group as far as speaker's are concerned. Look what

has been able to accomplish and most of what is now out there is

because of her. Our help can really help to promote early treatment.

Shara

> > Sadly, it is their lack of experience and education in

> treating

> > infants/toddlers that is speaking volumes here.

> >

> > I faced many physicians and experts who said the same thing, but

you

> > know what? I don't fault them anymore. I know now that it's just

> > their lack of exposure to infantile progressive scoliosis. This is

> > such a tremendously rare condition and early treatment is still a

> > fairly new concept here in the states.

> >

> > Even in my city, one of the leading Children's hospitals around

the

> > country, they have never done it or heard of it. Another surgeon

in

> > the same city, also world-reknowned for his cutting skills, gave

us

> a

> > totally different prognosis/recommendation.

> >

> > So, I'll tell you what I was told when I came here - find a

casting

> > doctor - YESTERDAY. Time is of the essence. He needs this NOW. It

> > is the only thing that will CORRECT a curve and protect his

precious

> > lungs and heart.

> >

> > We will get through the whys at some other time (or you can read

the

> > files here on the group). But, you have to trust the moms who have

> > been through it - even some of our doctors do not have the

> collective

> > wealth of knowledge here on this group because of the experience

> here

> > by so many of the parents going through it (or who have already

come

> > through it with great success.)

> >

> > It may be a struggle to GET there - to another city - but it is

> SOOO worth it!!!

> >

> > Sandi

> >

> > --

> > Mom to Madison, Skylar, on, Piper, & - diagnosed with

> > infantile scoliosis at 10 months with a 70° right thoracic curve.

> > Currently undergoing serial casting.

> >

> >

> >

> >

> >

> > ---------------------------------

> > Never miss a thing. Make Yahoo your homepage.

> >

> >