RE: Simon & Patrice

[Guest guest]

Thanks for sharing the article…Ill take a look later. Im glad Simon was able to get down to 21!! That’s fabulous! Any idea when his next series of casts will begin?Please always keep us posted.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Patrice ScheckSent: Tuesday, March 13, 2012 10:21 AMinfantile scoliosis treatment Subject: Re: Risser vs Mehta Hi Crystal,My son, Simon, is also 3 years old with PWS! He was in a Risser cast for a year (with a huge tummy cut-out) and his curve progressed - he began with a 42 degree curve and ended with a 57 degree curve. His doctor told us that his spine was too stiff for correction and put him in a brace to hold the curve until he was old enough for rod surgery. We then came across an article on the National PWS website that mentioned Mehta casting as the preferred treatment: http://pwsausa.org/syndrome/Guidelines%20on%20Scoliosis%20Monitoring%20and%20Treatment%20MA-65.pdfDespite what our doctor said, we had to try all possible options before resigning ourselves to future surgeries. We are so grateful to that she pointed us to a doctor in our area that is trained in EDF/Mehta casting. In his first EDF/Mehta cast, his spine measured 31 degrees - proving that his spine was NOT too stiff! He has been in an EDF/Mehta cast for a year and had gotten down to 21 degrees in cast. Unfortunately, he has had a rare reaction to his growth hormone therapy and has had to be out of cast now for 5 months - YIKES! - we're losing ground, but hoping to get back in cast soon. We were also told that kids with syndromes take longer to respond to the casting, but they DO respond. I don't know what the future will hold for him, as scoliosis has such a mind of its own, but we're confident that now we're pursuing the best option he has for avoiding surgery later. Blessings to you and your precious son!-Patrice 03/13/2012 9:40 AM, Crystal Redner wrote: Hello all,I am excited to be part of this group. I have a 3 year old son withPrader-Willi Syndrome and because of this syndrome he has infantilescoliosis.He was diagnosed at birth, and has been in a Risser cast for2 years. THey plan to keep him casted(braces in the summer) until heis strong enough to go through rod surgery in 13 or so years. He wasin a brace for 6 weeks and we lost all our progress in that shorttime. His muscle one is very low which is why he has the scoliosis.So we put him back in a cast. We then tok it off for 6 months as wewere so tired of him being in a cast but again lost all our progressand got worse. He has been up to a 50 degree curve at the right top ofhis spine. We even went to Childen's in Boston and they said the samethat he needs to be casted. So as I have been researching...can anyonetell me the difference between Risser and Mehta casting? From what Iread we should be doing Mehta not Risser........Thanks for listeningand any advice you can give...Have a great Tuesday :)Crystal Redner, Mother to Trevin (3) PWS Colorado-- Sending Smiles :)Crystal

[Guest guest]

Hi ,

Thanks for asking. We saw Dr. B. yesterday for a follow-up. Simon's

curve measured 52* - it was 48* right before Christmas. Dr. B. was

optimistic that it hadn't progressed (allowing for the 5* margin of

error). He has scheduled Simon to begin casting again on May 8th,

as his other medical issue is resolving and it should be okay to

cast by then. We are hopeful that by May Simon will be able to

resume his growth hormone therapy as well. The cast won't be as

effective if he's not growing! : ) -Patrice

On 03/16/2012 12:37 PM, Hyatt wrote:

Thanks for

sharing the article…Ill take a look later. Im glad

Simon was able to get down to 21!! That’s fabulous!

Any idea when his next series of casts will begin?

Please always

keep us posted.

HRH

From:

infantile scoliosis treatment

[mailto:infantile scoliosis treatment ] On

Behalf Of Patrice Scheck

Sent: Tuesday, March 13, 2012 10:21 AM

infantile scoliosis treatment

Subject: Re: Risser

vs Mehta

Hi Crystal,

My son, Simon, is also 3 years old with PWS! He

was in a Risser cast for a year (with a huge tummy

cut-out) and his curve progressed - he began with

a 42 degree curve and ended with a 57 degree

curve. His doctor told us that his spine was too

stiff for correction and put him in a brace to

hold the curve until he was old enough for rod

surgery. We then came across an article on the

National PWS website that mentioned Mehta casting

as the preferred treatment: http://pwsausa.org/syndrome/Guidelines%20on%20Scoliosis%20Monitoring%20and%20Treatment%20MA-65.pdf

Despite what our doctor said, we had to try all

possible options before resigning ourselves to

future surgeries. We are so grateful to

that she pointed us to a doctor in our area that

is trained in EDF/Mehta casting. In his first

EDF/Mehta cast, his spine measured 31 degrees -

proving that his spine was NOT too stiff! He has

been in an EDF/Mehta cast for a year and had

gotten down to 21 degrees in cast. Unfortunately,

he has had a rare reaction to his growth hormone

therapy and has had to be out of cast now for 5

months - YIKES! - we're losing ground, but hoping

to get back in cast soon. We were also told that

kids with syndromes take longer to respond to the

casting, but they DO respond. I don't know what

the future will hold for him, as scoliosis has

such a mind of its own, but we're confident that

now we're pursuing the best option he has for

avoiding surgery later.

Blessings to you and your precious son!

-Patrice

03/13/2012 9:40 AM, Crystal Redner wrote:

Hello all,

I am excited to be part of this group. I have

a 3 year old son with

Prader-Willi Syndrome and because of this

syndrome he has infantile

scoliosis.He was diagnosed at birth, and has

been in a Risser cast for

2 years. THey plan to keep him casted(braces

in the summer) until he

is strong enough to go through rod surgery in

13 or so years. He was

in a brace for 6 weeks and we lost all our

progress in that short

time. His muscle one is very low which is why

he has the scoliosis.

So we put him back in a cast. We then tok it

off for 6 months as we

were so tired of him being in a cast but again

lost all our progress

and got worse. He has been up to a 50 degree

curve at the right top of

his spine. We even went to Childen's in Boston

and they said the same

that he needs to be casted. So as I have been

researching...can anyone

tell me the difference between Risser and

Mehta casting? From what I

read we should be doing Mehta not

Risser........Thanks for listening

and any advice you can give...Have a great

Tuesday

Crystal Redner, Mother to Trevin (3) PWS

Colorado

--

Sending Smiles

Crystal

[Guest guest]

Great to hear Simons other medical issue is resolving and he’ll be back in cast soon! Good luck with the growth hormone therapy…HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Patrice ScheckSent: Saturday, March 17, 2012 1:35 PMinfantile scoliosis treatment Subject: Re: Simon & Patrice Hi ,Thanks for asking. We saw Dr. B. yesterday for a follow-up. Simon's curve measured 52* - it was 48* right before Christmas. Dr. B. was optimistic that it hadn't progressed (allowing for the 5* margin of error). He has scheduled Simon to begin casting again on May 8th, as his other medical issue is resolving and it should be okay to cast by then. We are hopeful that by May Simon will be able to resume his growth hormone therapy as well. The cast won't be as effective if he's not growing! : ) -PatriceOn 03/16/2012 12:37 PM, Hyatt wrote: Thanks for sharing the article…Ill take a look later. Im glad Simon was able to get down to 21!! That’s fabulous! Any idea when his next series of casts will begin?Please always keep us posted.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Patrice ScheckSent: Tuesday, March 13, 2012 10:21 AMinfantile scoliosis treatment Subject: Re: Risser vs Mehta Hi Crystal,My son, Simon, is also 3 years old with PWS! He was in a Risser cast for a year (with a huge tummy cut-out) and his curve progressed - he began with a 42 degree curve and ended with a 57 degree curve. His doctor told us that his spine was too stiff for correction and put him in a brace to hold the curve until he was old enough for rod surgery. We then came across an article on the National PWS website that mentioned Mehta casting as the preferred treatment: http://pwsausa.org/syndrome/Guidelines%20on%20Scoliosis%20Monitoring%20and%20Treatment%20MA-65.pdfDespite what our doctor said, we had to try all possible options before resigning ourselves to future surgeries. We are so grateful to that she pointed us to a doctor in our area that is trained in EDF/Mehta casting. In his first EDF/Mehta cast, his spine measured 31 degrees - proving that his spine was NOT too stiff! He has been in an EDF/Mehta cast for a year and had gotten down to 21 degrees in cast. Unfortunately, he has had a rare reaction to his growth hormone therapy and has had to be out of cast now for 5 months - YIKES! - we're losing ground, but hoping to get back in cast soon. We were also told that kids with syndromes take longer to respond to the casting, but they DO respond. I don't know what the future will hold for him, as scoliosis has such a mind of its own, but we're confident that now we're pursuing the best option he has for avoiding surgery later. Blessings to you and your precious son!-Patrice 03/13/2012 9:40 AM, Crystal Redner wrote: Hello all,I am excited to be part of this group. I have a 3 year old son withPrader-Willi Syndrome and because of this syndrome he has infantilescoliosis.He was diagnosed at birth, and has been in a Risser cast for2 years. THey plan to keep him casted(braces in the summer) until heis strong enough to go through rod surgery in 13 or so years. He wasin a brace for 6 weeks and we lost all our progress in that shorttime. His muscle one is very low which is why he has the scoliosis.So we put him back in a cast. We then tok it off for 6 months as wewere so tired of him being in a cast but again lost all our progressand got worse. He has been up to a 50 degree curve at the right top ofhis spine. We even went to Childen's in Boston and they said the samethat he needs to be casted. So as I have been researching...can anyonetell me the difference between Risser and Mehta casting? From what Iread we should be doing Mehta not Risser........Thanks for listeningand any advice you can give...Have a great Tuesday :)Crystal Redner, Mother to Trevin (3) PWS Colorado-- Sending Smiles :)Crystal