RE: Hello - We are new to the group!

[Guest guest]

Welcome to CAST, Keri.We have seen infants/children with different muscle issues get casted with different results and I think that EDF/Mehta casting experience is KEY for such a complicated case. An experienced EDF/Mehta casting doc will understand the importance of proper cast windows and will also have some understanding on potential muscle myopathy issues that could arise from serial casting. There are a few CAST members that have experience with g tubes and casting, so hopefully they’ll see this post and chime in. Please read the “Growth as a corrective force,” article and view A New Direction DVD (if you haven’t already).And, keep the questions coming.Sincerely,HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of KeriSent: Monday, March 19, 2012 3:53 PMinfantile scoliosis treatment Subject: Hello - We are new to the group! Hi - we just joined the group. Our two year old son was diagnosed with Congenital Myasthenic Syndrome 7 months ago. It is a very rare neuromuscular disease and his symptoms include low muscle tone throughout his trunk, poor swallow, speech delay, developmental delay, curvature of the spine and eye drooping. We have been at Mayo Clinic for the last five days and we have determine that his curve is much worse than we thought - his curve is currently at 58 degrees. The orthopedic surgeon is recommending that we cast him as soon as possible. We are a bit overwhelmed since he just had a g-tube placed three weeks ago but of course we will prepare to begin casting in the next few weeks.Questions:1. for those of you that have children with a neuromuscular condition, what if any issues have you run into with casting?2. I would also love to hear from those of you with toddlers that have g-tubes/mic-key buttons. Any tips or tricks you can recommend about when you do feedings?Thanks for all of your help!-Keri

[Guest guest]

Keri,

My daughter has had a g-tube since 1 month of age and has been casting the last

two years. You have to feed more slowly because the cast puts a lot of pressure

on the stomach. I also duct tape the cast on the chest part and under the

stomach, so that if she vomits or her tube leaks the cast won't get wet and

stinky. Feel free to email me with any questions.

, mom to Audrey, 2 years casting at SLC

>

> Hi - we just joined the group. Our two year old son was diagnosed with

Congenital Myasthenic Syndrome 7 months ago. It is a very rare neuromuscular

disease and his symptoms include low muscle tone throughout his trunk, poor

swallow, speech delay, developmental delay, curvature of the spine and eye

drooping. We have been at Mayo Clinic for the last five days and we have

determine that his curve is much worse than we thought - his curve is currently

at 58 degrees. The orthopedic surgeon is recommending that we cast him as soon

as possible. We are a bit overwhelmed since he just had a g-tube placed three

weeks ago but of course we will prepare to begin casting in the next few weeks.

>

> Questions:

> 1. for those of you that have children with a neuromuscular condition, what

if any issues have you run into with casting?

> 2. I would also love to hear from those of you with toddlers that have

g-tubes/mic-key buttons. Any tips or tricks you can recommend about when you do

feedings?

>

> Thanks for all of your help!

> -Keri

>

[Guest guest]

Keri,

My daughter has had a g-tube since 1 month of age and has been casting the last

two years. You have to feed more slowly because the cast puts a lot of pressure

on the stomach. I also duct tape the cast on the chest part and under the

stomach, so that if she vomits or her tube leaks the cast won't get wet and

stinky. Feel free to email me with any questions.

, mom to Audrey, 2 years casting at SLC

>

> Hi - we just joined the group. Our two year old son was diagnosed with

Congenital Myasthenic Syndrome 7 months ago. It is a very rare neuromuscular

disease and his symptoms include low muscle tone throughout his trunk, poor

swallow, speech delay, developmental delay, curvature of the spine and eye

drooping. We have been at Mayo Clinic for the last five days and we have

determine that his curve is much worse than we thought - his curve is currently

at 58 degrees. The orthopedic surgeon is recommending that we cast him as soon

as possible. We are a bit overwhelmed since he just had a g-tube placed three

weeks ago but of course we will prepare to begin casting in the next few weeks.

>

> Questions:

> 1. for those of you that have children with a neuromuscular condition, what

if any issues have you run into with casting?

> 2. I would also love to hear from those of you with toddlers that have

g-tubes/mic-key buttons. Any tips or tricks you can recommend about when you do

feedings?

>

> Thanks for all of your help!

> -Keri

>