Hoping to find some help

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Joined: Wed Feb 01, 2012 3:40 pm

Hoping to find some help

Postby FredAguilar » Wed Feb 01, 2012 4:01 pm

Hello, My name is Alfredo I am 26 years old and have a 3 year old son with spastic quadriplegic cerebral palsy, microcephaly, and termperature instability. As with most cases of CP my son's condition was the result of a brain injury caused during a truamatic birth. The doctors didn't give my son much of a chance to make it past 24hrs, but he did, and was transported to a childrens hospital; where against all odds he made it. He is now at home with us, but severely disabled (non-verbal,non-ambulatory,eats only through his gastronomy tube) It is hard, juggling work,life,and taking care of my son, but somehow his mom and I manage. My main concern is his sleeping cycle(or lack of). He has a very hard time falling asleep and when he does; it't not for long time only between 4-5 hours. He also can only fall asleep on his side in the fetal postion, and ONLY once we know he is ASLEEP can we put him on his back. He currently takes 3 different anti-seizure medications (Zonisamide, clonazepam, and im not in front of the last so my spelling of it would be poor). We have tried keeping him awake with activites, but that only agitates him and he gets really flustered. I have tried giving him melatonin (2ML) but we noticed no change. Any input,ideas, or advise would be geatly appreciated.