surgury risks/new issues

[Guest guest]

Hi all :-)

I have a 3 1/2 year old daughter that is suspected of having mito, and

we just found out also has a tethered spinal cord thats going to require

surgury very soon. I am concerned about the possible effects the shock

of the surgury on her system might effect the progression of the mito

and was wondering if anyone out there has any information to share with

me about something like this.

Madison has been having issues with swallowing for the last 5-6 months,

and we had an upper GI and a swallow study done in the last week. The

upper GI showed that she has GERD, however she has never had any

symptoms of this (never even spit up as a baby), and the swallow study

showed that she has naso-pharyngeal reflux, and we suspect she also has

Velo-Pharyngeal Insufficiency also. While we cannot say for sure until

more testing is done, it is suspected that all of these issues are new

for her since she has previously shown no signs of them. In those that

have children that have lost the ability to swallow and eat, what were

the initial factors that presented themselves, and were they by any

chance any of these new things that we have discovered in Madison??

Thanks so much for the help!!

BIG hugs,

Kass