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*Still Hoping

 
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mwilson
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Joined: 06 Dec 2005
Posts: 39

PostPosted: Tue Dec 06, 2005 9:52 am    Post subject: *Still Hoping Reply with quote

My son is 7 and we still do not have any idea what he has. I was told today that this is a possiblity and the geneticist seemed extremely positive. We thought that angelman syndrome was possible but that did not explain his medical problems. A brief history--Logan born at full term and at 2 days old when he never had a bowel movement discovered by accident that he had interrupted aortic arch, a VSD and hirschprungs. Had open heart surgury at 1 week and 3 days later a colostomy. He had the pull through done at 2 years. Started to try crawling at 1 1/2, walked at 3 (unsteady), does not talk, extremely happy child. Continues to progress but is still severely developmentally delayed. I have been told that he has cerebral palsy and then they said no, angelman and it came back no and now possibly this. I have just about given up on finding a diagnosis. He has been in school since he was 3 and is doing awesome. We are working on potty training now. If you have any suggestion I would really appreciate it. I feel like I am lost in all of this and am getting frustrated at not finding an answer.Thanks
mfhaney@charter.net


Last edited by mwilson on Tue Dec 06, 2005 8:21 pm; edited 1 time in total
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mwilson
Site Admin


Joined: 06 Dec 2005
Posts: 39

PostPosted: Tue Dec 06, 2005 9:53 am    Post subject: Still Hoping Reply with quote

Hello, from what you have described it sounds very possible that it could be MWS. Does your child have any history of seizures? My son has MWS and he is almost 6. I tried potty training back a few months ago but quickly realized that he wasn't ready to understand the concept so I am going to wait a little while. I am not sure where you live but I am in the U.S. and I know there are some awesome Doctors here. My son was diagnosed in Madera, Ca. and there are Doctors in L.A., Ca. with knowledge of this syndrome. I will keep you in my prayers and hope that you get a diagnosis for your son soon. I hope this has helped. You can also Email me at cnpenguin25@bak.rr.com
Corinna
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