Re: Casting is not working .. What now?

March 4, 2005

Oh ,

I am so sorry to hear that news. Don't worry though because did the same thing and it took a good year for his rvad to come down 15 degrees and his rotation to begin correcting. As soon as his rotation started getting better his RVAD decreased. His rvad used to be 51 and it is now 35 a year later his curve used to be 60 and now it is 48 out of the cast. I know this will be several more years of casting for our little guy. Ask him about your daughters rotation and feel free to tell him about . I think casting is the best option, I have never had a brace but have heard from some Mom's that their child progressed with a brace. You guys are in our prayers. Have faith and ask him to keep casting. last cast was on for almost 4 months and this was the best correction out of cast we have had. Good Luck .

Love,

Crista

March 4, 2005

,

did great in his cast. It was getting a little tight at the very end but he really did great in it. He has been really fussy since his cast has been removed, I think he misses his cast. His skin was fine and so was , a little red but by the next day it was fine.

Crista

March 4, 2005

Hi

Sorry to hear your news. My dd seems to be in a similar situation to yours. She too began casting last summer (june) with a curve of 62*. The first cast got it down to 38* but we haven't achieved much improvement since then (4*, which is within the margin of error). However, her doctors aren't willing to give up just yet and say there is still hope it will work. Even if it doesn't get her to 0* they will keep casting to maintain the curve. Single curves are harder to correct with casting than double curves (apparently). I know your doctor is great, but is there a chance that he just hasn't done enough casting to have seen a case that takes a little longer to correct? Not all cases are the same, and you have only been using this method for 8 or so months.The last time was xrayed out of the cast, her curve was at 58*, although this was a while ago and I don't know what it is now.

Hang on in there. I think you should continue with the casting. Growing into a 40 degree curve is very different to growing into a 60 degree curve. She still has a lot of growing to do. The last cast had, there was only 6 weeks between them and it made no difference. I didn't want her to be casted that frequently if it wasn't making any difference, so we've gone back to 3 months.

Unfortunately I don't know the answer to your qu. re fusion. Does she have a thoracic curve or a lumbar curve? This might make a difference, I don't know.

Take care

dmlmlm <dmayes1@...> wrote:

Hi everyone!We have just returned from our forth trip to Erie. This trip was very discouraging - we now feel like we are back to helpless stage.For some background, is 26 months old. She was diagnosed with scoliosis at 6 months. The curve was at 28 degrees. After five months of "watching" (prescribed by our wonderful Orthopedic - who thinks casting is the old way of treating scoliosis), her curve progressed to 54 degrees. She was then fitted for a TLSO brace. She could not tolerate this brace - required oxygen to breath during the night. After discovering the Infantile Scoliosis Outreach Program, We contacted Dr. and he began casting in July of 2004. She went from a 64 degree curve to a 40 degree curve on the first casting. The problem is that Dr.

cannot get any more correction and her curve goes right back to 60 after being out of the cast for 12 hours. This time he applied the cast and cut it off and tried again - still only down to 40 degrees. He spoke with us and stated that we will probably need to begin looking at other options. His last effort will be to change the cast more frequently. We are going back on March 15th to change this cast and see if he can get more correction. We wants to change it every two weeks to a month to see if more frequent manipulation will help. However, he does not have a lot of hope at this point. These frequent trips will not be easy with a 2 year old and a 1 month old - we live in Atlanta. He stated that is the only patient that he has casted that has not seen dramatic results and a chance for total correction. He is not sure why is not responding - he

said possibly there is a fusion that is just not showing up yet.We asked what the other options were and he said growth rods or a brace (just to hold the curve). He was not confident that growth rods would work because her spine seems to be so stiff, he said that the spine may just grow around the rods. Obviously, bracing has not worked in the past. As I said, we are feeling very helpless again. I am looking for other suggestions ...Do any of you have similar experiences?Is there another group for parents of children with Scoliosis that might have more information?Has anyone had success with bracing for just holding the curve?We did tell Dr. that we would like to continue casting as long as possible to stop the curve from progressing. He said that the fusion surgery is more than likely in 's future. Does anyone know what age the child should be to

have this surgery and not have difficulty because the spine stops growing?Thanks for any suggestions or help. Atlanta, GeorgiaSend instant messages to your online friends http://uk.messenger.

March 4, 2005

Thanks so much for the response.

's curve is Thoracic.

Who is your daughters doctor and how old is your daughter?

I don't know how long Dr. has been casting. He is great!

He did say he will be seeing Dr. Mehta in May (hopefully she will be

able to make it to the states then) and he plans to consult with her

about .

I agree with you - even if we cannot get it to 0* then 40 is better

than 60. We do plan to keep casting and Dr. is willing to

continue. He is just concerned about the amount of travel that we

are doing.

Thanks again for reassuring me.

.

>

> Hi everyone!

>

> We have just returned from our forth trip to Erie. This trip was

> very discouraging - we now feel like we are back to helpless stage.

>

> For some background, is 26 months old. She was diagnosed

> with scoliosis at 6 months. The curve was at 28 degrees. After

five

> months of " watching " (prescribed by our wonderful Orthopedic - who

> thinks casting is the old way of treating scoliosis), her curve

> progressed to 54 degrees. She was then fitted for a TLSO brace.

> She could not tolerate this brace - required oxygen to breath

during

> the night. After discovering the Infantile Scoliosis Outreach

> Program, We contacted Dr. and he began casting in

> July of 2004. She went from a 64 degree curve to a 40 degree

curve

> on the first casting. The problem is that Dr. cannot get

> any more correction and her curve goes right back to 60 after

being

> out of the cast for 12 hours.

>

> This time he applied the cast and cut it off and tried again -

still

> only down to 40 degrees. He spoke with us and stated that we will

> probably need to begin looking at other options. His last effort

> will be to change the cast more frequently. We are going back on

> March 15th to change this cast and see if he can get more

> correction. We wants to change it every two weeks to a month to

see

> if more frequent manipulation will help. However, he does not

have

> a lot of hope at this point. These frequent trips will not be

easy

> with a 2 year old and a 1 month old - we live in Atlanta.

>

> He stated that is the only patient that he has casted that

> has not seen dramatic results and a chance for total correction.

He

> is not sure why is not responding - he said possibly there

is

> a fusion that is just not showing up yet.

>

> We asked what the other options were and he said growth rods or a

> brace (just to hold the curve). He was not confident that growth

> rods would work because her spine seems to be so stiff, he said

that

> the spine may just grow around the rods. Obviously, bracing has

not

> worked in the past.

>

> As I said, we are feeling very helpless again. I am looking for

> other suggestions ...

>

> Do any of you have similar experiences?

>

> Is there another group for parents of children with Scoliosis that

> might have more information?

>

> Has anyone had success with bracing for just holding the curve?

>

> We did tell Dr. that we would like to continue casting as

> long as possible to stop the curve from progressing. He said that

> the fusion surgery is more than likely in 's future. Does

> anyone know what age the child should be to have this surgery and

> not have difficulty because the spine stops growing?

>

> Thanks for any suggestions or help.

>

> Atlanta, Georgia

>

March 4, 2005

Thanks Crista!

Please do keep us in your prayers as we will keep you in ours.

Ultimately prayer is the best solution!

He did not give us the rotation - he ususally does but I think he as

so focused on the curve not correcting that he did not think to give

us the rotation. Not to mention - he was dealing with a crying

hormonal new mom! I will ask when we see him on the 15th.

How does do with the cast on for 4 months? Dr.

initially wanted to keep in the cast until the end of March

but we did not want to go that long. We are so concerned about her

skin. It is beginning to look bad to me now but Dr. said

that it will probably get a lot worse He does not think that it

is bad at all.

Thanks again.

>

> Oh ,

> I am so sorry to hear that news. Don't worry though because

did the

> same thing and it took a good year for his rvad to come down 15

degrees and

> his rotation to begin correcting. As soon as his rotation started

getting

> better his RVAD decreased. His rvad used to be 51 and it is now

35 a year later

> his curve used to be 60 and now it is 48 out of the cast. I know

this will be

> several more years of casting for our little guy. Ask him about

your

> daughters rotation and feel free to tell him about . I

think casting is the

> best option, I have never had a brace but have heard from some

Mom's that their

> child progressed with a brace. You guys are in our prayers. Have

faith and

> ask him to keep casting. last cast was on for almost 4

months and

> this was the best correction out of cast we have had. Good Luck

.

>

> Love,

> Crista

March 4, 2005

We are in the UK and see Mr (we don't call consultants Drs) at the Royal National Orthopaedic Hospital at Stanmore. has just turned 2 and a half. Her curve is thoracic too. From the people I've spoken to, these seem to be the toughest to fix.

Good luck with it all

dmlmlm <dmayes1@...> wrote:

Thanks so much for the response.'s curve is Thoracic.Who is your daughters doctor and how old is your daughter?I don't know how long Dr. has been casting. He is great! He did say he will be seeing Dr. Mehta in May (hopefully she will be able to make it to the states then) and he plans to consult with her about .I agree with you - even if we cannot get it to 0* then 40 is better than 60. We do plan to keep casting and Dr. is willing to continue. He is just concerned about the amount of travel that we are doing.Thanks again for reassuring me..> > Hi everyone!> > We have just returned from our forth trip to Erie. This trip was > very discouraging - we now feel like we are back to helpless stage.> > For some background, is 26 months old. She was diagnosed > with scoliosis at 6 months. The curve was at 28 degrees. After five > months of "watching" (prescribed

by our wonderful Orthopedic - who > thinks casting is the old way of treating scoliosis), her curve > progressed to 54 degrees. She was then fitted for a TLSO brace. > She could not tolerate this brace - required oxygen to breath during > the night. After discovering the Infantile Scoliosis Outreach > Program, We contacted Dr. and he began casting in > July of 2004. She went from a 64 degree curve to a 40 degree curve > on the first casting. The problem is that Dr. cannot get > any more correction and her curve goes right back to 60 after being > out of the cast for 12 hours. > > This time he applied the cast and cut it off and tried again - still > only down to 40 degrees. He spoke with us and stated that we will > probably need to begin looking at other options. His last effort > will be to change

the cast more frequently. We are going back on > March 15th to change this cast and see if he can get more > correction. We wants to change it every two weeks to a month to see > if more frequent manipulation will help. However, he does not have > a lot of hope at this point. These frequent trips will not be easy > with a 2 year old and a 1 month old - we live in Atlanta. > > He stated that is the only patient that he has casted that > has not seen dramatic results and a chance for total correction. He > is not sure why is not responding - he said possibly there is > a fusion that is just not showing up yet.> > We asked what the other options were and he said growth rods or a > brace (just to hold the curve). He was not confident that growth > rods would work because her spine seems to be so stiff, he said

that > the spine may just grow around the rods. Obviously, bracing has not > worked in the past. > > As I said, we are feeling very helpless again. I am looking for > other suggestions ...> > Do any of you have similar experiences?> > Is there another group for parents of children with Scoliosis that > might have more information?> > Has anyone had success with bracing for just holding the curve?> > We did tell Dr. that we would like to continue casting as > long as possible to stop the curve from progressing. He said that > the fusion surgery is more than likely in 's future. Does > anyone know what age the child should be to have this surgery and > not have difficulty because the spine stops growing?> > Thanks for any suggestions or help.> > > Atlanta,

Georgia> > > > > > >

March 4, 2005

Hi ,

Like the others said, I will keep you in our thoughts.

I can only imagine how discouraged you must feel at

this point. The good thing is that there is time to

continue casting, and time to research other options.

You said: <<He was not confident that growth rods

would work because her spine seems to be so stiff, he

said that the spine may just grow around the rods.>>

The traditional growth rods could possibly have this

outcome. However, the VEPTR/TRP rods are placed so

this problem shouldn't happen. The VEPTR device may

be something you could look into. I'm a little

embarrassed about the mega-post I did earlier today,

but hopefully it will give parents who need other

options beside casting/bracing/observation information

to help make informed choices for their children.

Maybe you could get an evaluation appointment with one

of the VEPTR centers. Since she is already a

Shriner's patient, maybe you could get her to see Dr.

Betz and his team (including Dr. D') at Shriners

in Philly. They would be able to help you. I do know

that they are looking for idiopathic cases to study -

placing the VEPTR device and monitoring the patient

progress.

Good luck and know we care!

Carmell

mom to Kara 18, idiopathic scoliosis, Blake 13, GERD and Braydon 9, VACTERL,

GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic

insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96),

missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single

umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

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March 5, 2005

<<Has anyone had success with bracing for just holding the curve?>>

Yes, we have, and we've also gone from 35º out of the brace down to 17º out

of the brace, over a period of 3.5 years of wearing it full time. However,

my daughter's curve is very flexible.

Nola, Bronwen's mom

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March 5, 2005

Hi, my name is Robin & I too have a child who casting was not an option for.

At 12 months his scolio was at 58 and had rotation & rib hump. We went to

SLC for consult, but was told his scoli was too ridgid & casting would only

further reduce his already diminished pulmonary condition. Our ortho in

Denver said that the only hope would be to place grow rods & have his spine

fused. I was unwilling to accept that. That's when I discovered Dr.Campbel

in San who pioneered the Titanium Rib Project-VEPTR.COM. Until

recently, the FDA had approved this procedure only for rib diformaties, but

my son Connor is the 1st to receive FDA compassionate use appeal for

scoliosis.This procedure had been done many times for scoli kids while in

clinical trials for 17 years, but was not included in the final devise

approval. Connor is now at 72 degrees, 19 months old & waiting for a

surgery date. This may be an option for you as well. There is no spinal

fusion and they almost always expect close to total correction, outpatient

surgery for expansion, much less envasive. There are now many doctors around

the country doing this, I hope it is useful, check the website & photo's.