Hello - We are new to the group!

[Guest guest]

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