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Old 01-03-2009, 07:18 PM
Busymommie Busymommie is offline
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Join Date: Aug 2006
Location: Winston-Salem, NC
Posts: 116
15 yr Member
Busymommie Busymommie is offline
Member
 
Join Date: Aug 2006
Location: Winston-Salem, NC
Posts: 116
15 yr Member
Default CMT progression in my daughter

I haven't posted here in ages, but I am in a desperate search for information.

Riley was dx'd with CMT about 3 years ago. She also has pervasive developmental delay, and an intractible seizure disorder.

She reecently (christmas day) was hospitalized with aspiration pneurmonia. AT the hospital they said the aspiration occured during a seizure, but she has had thousands of seizures in her lifetime so I have a hard time believing thats the cause.

She has severe sleep apnea, the neuro says as a result of CMT.

Is it possible that the aspiration is because of the CMT?

She has always had eating issue, and in september of this year got a g-tube, but that was mainly for suppliments and hydration since she has had about 10 hospitilazations for dehydration and seizures in the last 6 months.

I am worried that her CMT is progressing.

(yes, we have an appointment with her neurologist, and gastrointerologist on Monday) I am just looking for info...
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Denae- Mom to
Riley (9)- Lennox Gastaut Syndrome & Charcot- Marie-Tooth
Brittany (11) a Prissy Princess
Sarah (14) Aspergers Syndrome
Victoria (16) Above Average Teenage sister
Jade (11) my niece, but now also my baby
Jacob (6) Possible Aspergers, but we have to sort through his anger/abandonment issues first
Jackson (4) The sweetest little guy you will ever meet.
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Curious (01-03-2009)