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General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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01-03-2009, 07:18 PM | #1 | ||
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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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01-03-2009, 07:32 PM | #2 | ||
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Yappiest Elder Member
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Here is the link to Denea's thread on the PN forum.
http://neurotalk.psychcentral.com/thread68227.html I hope someone has some ideas or answers for you Denea.
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