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Hi,
My 10 year old daughter was diagnosed in September 2008 with Pitt Hopkins Syndrome. She is currently on Pepcid for Reflux. She tends to wake up gasping for air. She is MR severe to profound. She has had corrective eye surgery and has low muscle tone. She knows some ASL. She can be self-injurious. She is non-verbal. My husband and I have tested negative. I have to other daughters (older than Macie) who are also not carriers of the gene. Macie recently has problems stayiing asleep. She is waking at all kinds of crazy hours and not wanting to go back to sleep. Is anyone else experiencing this. I am mentally and physically exhausted!! Anyone have some suggestions???????