Re: 1st appointment for 3 year old on April 29th

[Guest guest]

Welcome to cast.

It is hard to tell how much correction your daughter will get at 3 years old, it

will partially depend on how flexible her spine is and what degree her curve is

at. That said Casting can still improve her curve even if it doesn't completely

correct it, which it still may you would have to talk to a casting doctor. YOu

are probably looking at an extended period of casting due to her age. Even if

casting can not completely correct the curve it can buy her valuable growing

time. Some kids will still need some sort of surgery later on. It is really

hard to say.

As for why didn't they catch it earlier - most doctors are not trained to look

for it, Progressive cases are rare and they tend to write it off (at least that

is my opinion). They misdiagnosed my son's hump as muscle build up for months

and I didn't push it even though I was not comfortable with that answer. It was

only when he started having problems walking did I demand them pay attention.

He clearly had his from birth and had minor signs and it took then 16 months of

me mentioning different small symptoms for me to get an x-ray. It is really

frustrating but it wasn't your fault at all. As parents we rely on our doctors

to address our concerns.

The first thing I would say is that you should get x-rays and a brain and spine

MRI to rule out any congenital causes for the scoliosis. The MRI can take a

while to get because it needs to be done under anesthesia and there are limited

slots for these scans.

I would also call your closest casting doctor Monday morning for an appointment.

I don't know what type of insurance you have but ours absolutely covers it and

has never given us a hard time. I live right next to Bennington, VT and can

give you the contact information to the 2 closest Mehta trained casting doctors.

They are both in Rochester, NY. Our doctor out there is incredible and I would

highly recommend him. I have also heard wonderful things about the other doctor

out there. We can't mention doctors names on here so email me directly

jennifer.leggett@... or feel free to call me (518)686-1452 if you would

like and I can give you the information and answer any other questions you have.

Jenn

Mommy to Cole, 2 years old, 5th cast from Rochester, 13 degrees out of cast down

from 47

>

> My 3 year old little girl has had a bump on the left side of her lower spine

for about a year now. I thought it was a muscle imbalance at first, but it just

got worse. At her well-child visit last Monday I asked the doctor about it and

he said it looked like scoliosis and is sending us to Dartmouth/Hitchock in NH.

>

> So my first question is..did we catch it too late???? How come no one caught

it? I have been asking about her walking for over a year now..we were sent to an

ortho to have her foot looked at and he saw nothing, I asked my son's physical

therapist to look at her and she saw nothing, I asked my husband to look at it

and he saw nothing. I know that it doesn't matter now, but it is frustrating and

leaves me feeling guilty I didn't push harder.

>

> So, she has the bump on her back, and her right shoulder sticks up when she

bends over..it got worse the past few months when she had a growth spurt of

about 2 inches. We haven't had x-rays or anything yet..I don't now what degree

it is, or the RVAD or anything like that and it is premature to talk about

casting I suppose but my husband and I are in agreement we will not wait and see

what happens, you can already see her rib cage beginning to twist.

>

> Is 3 years old too late for casting? I am so afraid I missed the window to

help her..We live in Vermont...who is the best?? Does insurance pay for it? What

kind of future are we looking at for our little girl...

>

[Guest guest]

Welcome to CAST. May I recommend a few things? First, I would get a

standing x-ray taken with her arms at her side (not above her head). Also,

get a lateral view. The films will help the doc determine her degree of

curvature (Cobb angle)and RVAD. Make sure to get copies of her x-rays so

they can be sent to trained ET docs. Second, please read " Growth as a

corrective force in the early treatment of progressive infantile

scoliosis, " by Mehta, which can be found in the FILES section of this

group.

IMHO, its never too late to cast. It may be too late to achieve full

correction, but proper EDF casting can buy invaluable growth time for our

kiddos who missed their window to grow straight. I have seen 5 yrs olds

experience great results with properly applied EDF...

Once films have been taken and you determine exactly where and to what

degree her curve(s) have progressed, the best care plan can be developed.

Let us know if you have questions on the article, or DVD.

Glad you found us!

HRH

> My 3 year old little girl has had a bump on the left side of her lower

> spine for about a year now. I thought it was a muscle imbalance at first,

> but it just got worse. At her well-child visit last Monday I asked the

> doctor about it and he said it looked like scoliosis and is sending us to

> Dartmouth/Hitchock in NH.

>

> So my first question is..did we catch it too late???? How come no one

> caught it? I have been asking about her walking for over a year now..we

> were sent to an ortho to have her foot looked at and he saw nothing, I

> asked my son's physical therapist to look at her and she saw nothing, I

> asked my husband to look at it and he saw nothing. I know that it doesn't

> matter now, but it is frustrating and leaves me feeling guilty I didn't

> push harder.

>

> So, she has the bump on her back, and her right shoulder sticks up when

> she bends over..it got worse the past few months when she had a growth

> spurt of about 2 inches. We haven't had x-rays or anything yet..I don't

> now what degree it is, or the RVAD or anything like that and it is

> premature to talk about casting I suppose but my husband and I are in

> agreement we will not wait and see what happens, you can already see her

> rib cage beginning to twist.

>

> Is 3 years old too late for casting? I am so afraid I missed the window to

> help her..We live in Vermont...who is the best?? Does insurance pay for

> it? What kind of future are we looking at for our little girl...

>

>

[Guest guest]

Hi, just wanted to tell you that my daughter was 4 when she was casted for the first *CORRECT* time. She was casted earlier, but it was done incorrectly. We had to wait for Stage 4 pressure wounds to heal, and then, well, I dealt with alot of fear of having her casted again. Anyway, long story short, my child is casted in Chicago, and she is doing very well with it.

I don't know your whole situation, and I will point out that my child does have another medical condition besides scoliosis that makes her tend to be on the small side, anyway. (which is a plus when you are casting at an older age), but I defiantly would pursue it, and just see what they say. 

Best of luck to you, and if you would like to find out more about our doctor (he seems to have a few " older " casting patients), just email me at 216sa@...                                     Janet 

On Sun, Apr 18, 2010 at 5:58 AM, genericallyloud <jennifer.leggett@...> wrote:

 

Welcome to cast.

It is hard to tell how much correction your daughter will get at 3 years old, it will partially depend on how flexible her spine is and what degree her curve is at. That said Casting can still improve her curve even if it doesn't completely correct it, which it still may you would have to talk to a casting doctor. YOu are probably looking at an extended period of casting due to her age. Even if casting can not completely correct the curve it can buy her valuable growing time. Some kids will still need some sort of surgery later on. It is really hard to say.

As for why didn't they catch it earlier - most doctors are not trained to look for it, Progressive cases are rare and they tend to write it off (at least that is my opinion). They misdiagnosed my son's hump as muscle build up for months and I didn't push it even though I was not comfortable with that answer. It was only when he started having problems walking did I demand them pay attention. He clearly had his from birth and had minor signs and it took then 16 months of me mentioning different small symptoms for me to get an x-ray. It is really frustrating but it wasn't your fault at all. As parents we rely on our doctors to address our concerns.

The first thing I would say is that you should get x-rays and a brain and spine MRI to rule out any congenital causes for the scoliosis. The MRI can take a while to get because it needs to be done under anesthesia and there are limited slots for these scans.

I would also call your closest casting doctor Monday morning for an appointment. I don't know what type of insurance you have but ours absolutely covers it and has never given us a hard time. I live right next to Bennington, VT and can give you the contact information to the 2 closest Mehta trained casting doctors. They are both in Rochester, NY. Our doctor out there is incredible and I would highly recommend him. I have also heard wonderful things about the other doctor out there. We can't mention doctors names on here so email me directly jennifer.leggett@... or feel free to call me (518)686-1452 if you would like and I can give you the information and answer any other questions you have.

Jenn

Mommy to Cole, 2 years old, 5th cast from Rochester, 13 degrees out of cast down from 47

>

> My 3 year old little girl has had a bump on the left side of her lower spine for about a year now. I thought it was a muscle imbalance at first, but it just got worse. At her well-child visit last Monday I asked the doctor about it and he said it looked like scoliosis and is sending us to Dartmouth/Hitchock in NH.

>

> So my first question is..did we catch it too late???? How come no one caught it? I have been asking about her walking for over a year now..we were sent to an ortho to have her foot looked at and he saw nothing, I asked my son's physical therapist to look at her and she saw nothing, I asked my husband to look at it and he saw nothing. I know that it doesn't matter now, but it is frustrating and leaves me feeling guilty I didn't push harder.

>

> So, she has the bump on her back, and her right shoulder sticks up when she bends over..it got worse the past few months when she had a growth spurt of about 2 inches. We haven't had x-rays or anything yet..I don't now what degree it is, or the RVAD or anything like that and it is premature to talk about casting I suppose but my husband and I are in agreement we will not wait and see what happens, you can already see her rib cage beginning to twist.

>

> Is 3 years old too late for casting? I am so afraid I missed the window to help her..We live in Vermont...who is the best?? Does insurance pay for it? What kind of future are we looking at for our little girl...

>

[Guest guest]

Jenn and have said all of the most important things to begin with, I just wanted to also say welcome to CAST! My best advice to add is to not wait to get these appointments for the X-rays and MRI. If you decide to have your daughter casted, you don't want to miss any more growth spurts, so book the appointments all ASAP, including getting an opinion from a Mehta trained doctor. Many of us have found that the MRI can take 2 months to get in for in some cities, and most docs will not cast before one is taken to rule other conditions out. Don't panic, but just get your ducks in a row, so to speak, so you don't lose more time. Also do ask to be put in for a cancellation slot if one opens up. We like to call it being politely pushy. If you can, do the MRI of both the brain and spine,

many of us have had to have 2 done and that is double the anesthesia, more time lost, etc...if you can do it all at once, you may avoid that. That is just advice based on our experience.I agree that Metha EDF casting can buy valuable growing time, even if you eventually have to do surgery, the longer you can put that off, the better, in my opinion. The growing rod/hardware surgeries have to be adjusted every six months, more frequently when there are complications, which there usually are. So, unfortunately, that is not an easier road than the casts, which children adjust really well to. It just becomes normal life. My son's story with photos is under the link Crooked Love, on the home page of www.infantilescoliosis.org on the left side in blue, just click on the link. There are some photos as well, and there are many great stories in the stories section of the website. The

casts work gently, like the re-direction of a vine growing up a wall. Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Sun, April 18, 2010 7:28:02 AMSubject: Re: 1st appointment for 3 year old on April 29th

Welcome to CAST. May I recommend a few things? First, I would get a

standing x-ray taken with her arms at her side (not above her head). Also,

get a lateral view. The films will help the doc determine her degree of

curvature (Cobb angle)and RVAD. Make sure to get copies of her x-rays so

they can be sent to trained ET docs. Second, please read "Growth as a

corrective force in the early treatment of progressive infantile

scoliosis," by Mehta, which can be found in the FILES section of this

group.

IMHO, its never too late to cast. It may be too late to achieve full

correction, but proper EDF casting can buy invaluable growth time for our

kiddos who missed their window to grow straight. I have seen 5 yrs olds

experience great results with properly applied EDF...

Once films have been taken and you determine exactly where and to what

degree her curve(s) have progressed, the best care plan can be developed.

Let us know if you have questions on the article, or DVD.

Glad you found us!

HRH

> My 3 year old little girl has had a bump on the left side of her lower

> spine for about a year now. I thought it was a muscle imbalance at first,

> but it just got worse. At her well-child visit last Monday I asked the

> doctor about it and he said it looked like scoliosis and is sending us to

> Dartmouth/Hitchock in NH.

>

> So my first question is..did we catch it too late???? How come no one

> caught it? I have been asking about her walking for over a year now..we

> were sent to an ortho to have her foot looked at and he saw nothing, I

> asked my son's physical therapist to look at her and she saw nothing, I

> asked my husband to look at it and he saw nothing. I know that it doesn't

> matter now, but it is frustrating and leaves me feeling guilty I didn't

> push harder.

>

> So, she has the bump on her back, and her right shoulder sticks up when

> she bends over..it got worse the past few months when she had a growth

> spurt of about 2 inches. We haven't had x-rays or anything yet..I don't

> now what degree it is, or the RVAD or anything like that and it is

> premature to talk about casting I suppose but my husband and I are in

> agreement we will not wait and see what happens, you can already see her

> rib cage beginning to twist.

>

> Is 3 years old too late for casting? I am so afraid I missed the window to

> help her..We live in Vermont...who is the best?? Does insurance pay for

> it? What kind of future are we looking at for our little girl...

>

>

[Guest guest]

Please send your medical info to several of the docs on our website. Rochhester may be closest to you? We also ge there and would be happy to talk tp you by phone if you have any questions at all. At 3, most children's growth spurts slow down, but that doesn't mean that casting isn't an option for you. Correction may take longer, or delay surgery if needed by several years. Every child is different. Please keep me posted. - Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: luckyvtmama <amibeautinet@...>Subject: 1st appointment for 3 year old on April 29thinfantile scoliosis treatment Date: Sunday, April 18, 2010, 4:12 AM

My 3 year old little girl has had a bump on the left side of her lower spine for about a year now. I thought it was a muscle imbalance at first, but it just got worse. At her well-child visit last Monday I asked the doctor about it and he said it looked like scoliosis and is sending us to Dartmouth/Hitchock in NH. So my first question is..did we catch it too late???? How come no one caught it? I have been asking about her walking for over a year now..we were sent to an ortho to have her foot looked at and he saw nothing, I asked my son's physical therapist to look at her and she saw nothing, I asked my husband to look at it and he saw nothing. I know that it doesn't matter now, but it is frustrating and leaves me feeling guilty I didn't push harder. So, she has the bump on her back, and her right shoulder sticks up when she bends over..it got worse the past few months when she had a growth spurt of about 2 inches. We haven't had

x-rays or anything yet..I don't now what degree it is, or the RVAD or anything like that and it is premature to talk about casting I suppose but my husband and I are in agreement we will not wait and see what happens, you can already see her rib cage beginning to twist. Is 3 years old too late for casting? I am so afraid I missed the window to help her..We live in Vermont...who is the best?? Does insurance pay for it? What kind of future are we looking at for our little girl...

[Guest guest]

My son was casted at almost 3 years old and had some correction and is still being casted. He is going into a brace for the summer but will probably need to be casted again. He will need surgery but casting has delayed that hopefully until he is 11 (fingers crossed). So, it is never truly too late, but under 2 is really IDEAL. Good luck and welcome to CAST. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Sun, April 18, 2010 9:28:02 AMSubject: Re: 1st appointment for 3 year old on April 29th

Welcome to CAST. May I recommend a few things? First, I would get astanding x-ray taken with her arms at her side (not above her head). Also,get a lateral view. The films will help the doc determine her degree ofcurvature (Cobb angle)and RVAD. Make sure to get copies of her x-rays sothey can be sent to trained ET docs. Second, please read "Growth as acorrective force in the early treatment of progressive infantilescoliosis," by Mehta, which can be found in the FILES section of thisgroup.IMHO, its never too late to cast. It may be too late to achieve fullcorrection, but proper EDF casting can buy invaluable growth time for ourkiddos who missed their window to grow straight. I have seen 5 yrs oldsexperience great results with properly applied EDF...Once films have been taken and you determine exactly where and to whatdegree her curve(s) have progressed, the best care plan can be developed.Let us

know if you have questions on the article, or DVD.Glad you found us!HRH> My 3 year old little girl has had a bump on the left side of her lower> spine for about a year now. I thought it was a muscle imbalance at first,> but it just got worse. At her well-child visit last Monday I asked the> doctor about it and he said it looked like scoliosis and is sending us to> Dartmouth/Hitchock in NH.>> So my first question is..did we catch it too late???? How come no one> caught it? I have been asking about her walking for over a year now..we> were sent to an ortho to have her foot looked at and he saw nothing, I> asked my son's physical therapist to look at her and she saw nothing, I> asked my husband to look at it and he saw nothing. I know that it doesn't> matter now, but it is frustrating and leaves me feeling guilty I didn't> push harder.>> So,

she has the bump on her back, and her right shoulder sticks up when> she bends over..it got worse the past few months when she had a growth> spurt of about 2 inches. We haven't had x-rays or anything yet..I don't> now what degree it is, or the RVAD or anything like that and it is> premature to talk about casting I suppose but my husband and I are in> agreement we will not wait and see what happens, you can already see her> rib cage beginning to twist.>> Is 3 years old too late for casting? I am so afraid I missed the window to> help her..We live in Vermont...who is the best?? Does insurance pay for> it? What kind of future are we looking at for our little girl...>>

[Guest guest]

Thank you all so much, what a wonderful group of people..! I have begun my list

of must haves so I am prepared on Thursday and have my " to call " list for

tomorrow morning, 1st being the cancellation list and then the casting doctors.

Will post her medical information when we have it and hopefully we can figure

out what's happening. Am a little worried as she is in the 95% percentile for

both her height and her weight (39 inches, 36 lbs) and this may have a negative

impact on treatment..but will just have to wait and see what the doc says!

Thank you all for the guidance! Must go get my #'s ready..

[Guest guest]

Just so you know COle is 27 months old and is 30lbs and 37 inches so he is also

in the 90 somthing percentile and has responded very very well. Just to warn

you that once casted she may be a couple inches taller! That happened to us! I

also just sent you a private message with numbers and some other info.

Jenn

Mommy to Cole, 2 years, 5th cast from Rochester, 13 degrees out of cast down

from 47

>

> Thank you all so much, what a wonderful group of people..! I have begun my

list of must haves so I am prepared on Thursday and have my " to call " list for

tomorrow morning, 1st being the cancellation list and then the casting doctors.

Will post her medical information when we have it and hopefully we can figure

out what's happening. Am a little worried as she is in the 95% percentile for

both her height and her weight (39 inches, 36 lbs) and this may have a negative

impact on treatment..but will just have to wait and see what the doc says!

> Thank you all for the guidance! Must go get my #'s ready..

>