Angelman's Syndrome

[nagymom]

I'm looking for others who have a child diagnosed with (or know someone who does) Angelman's Syndrome. My nephew's little boy was recently diagnosed with this. I am doing some research on-line for family and now I'm interested in seeing if I can find anyone here who knows this disorder. I would like to hook this little boy's folks up with people who have "been there, done that" for support. They are handling it well so far. I know as a parent and grandparent that I would love to be able to talk to others with simililar situations if I were facing this.

Thanks so much!
Jayne (Great Auntie)

[Caronamy]

Please post if you find any info. Never heard of this Syndrome either.

[nagymom]

I'm still learning myself but it's a neurolodevelopmental disorder. The child is very happy but can't speak and so far can't walk. There are developmental delays associated with seizures.
Apparently this comes from the mother's side of the family (per the c=doctors) and that it may well go back generations. They ahve no recent history so this is the case with them.

They now have 3 children and she has had her tubes tied. The oldest is 6 and is developing normally. She had a baby recently so only time will tell if he is afflicted as well.

Jayne

[Lifestar]

http://groups.msn.com/AngelmanSyndromeSupportGroup

Here is a link to a support group... Maybe you could get a little information from some of the families there, but .. "be careful what you wish for"

I know when I joined a support group after my dd's Chiari diagnosis I was horrified.. and by the grace of G-d, her symptoms never progressed ... These support groups can be rough places to get information, you hear a lot of heart-breaking stories.. but you can also get a lot of support when you need it.

I'll keep your little grand-nephew in my prayers.

Val


PS. Here is a list of comprehensive Angelman's resources.. I hope some of these links help.
http://specialchildren.about.com/gi/...5Ffamilies.htm

[Dadia]

My DH was dx'd with a neurological disorder & when he mentioned finding a support group, his Neuro really discouraged that. She told him that, altho they are very helpful for lots of people, his condition was not really very progressed & likely wouldn't BE progressing with his medications & doing his part to take care of himself. Well, he wouldn't be satisfied until he found a support group. Sure enough, the people there are really nice & there's lots of helpful information, but the group is not close & we do not attend regularly. We get their monthly newsletters & when there's a particular topic or speaker he is interested in, we will make special effort to attend. Over the past 4 years, we have probably gone 3 or 4 times at the most, but each time we do, he is totally unnerved - an absolute basket case - for a few days. I think he has finally decided to keep up with the latest info through his doctors & the internet, but has indicated that he wishes he had taken his original neuro's advice......just be careful.

[Speechmom]

Jayne,

Try this link: www.angelman.org/ IT has several different categories from the home page, including one with info for families that is explained in pretty much plain English (rather than medical terms). Your grand-nephew should start to get services as soon as possible inlcuding special education, speech, and possible Occupational and Physical therapy. I am a speech therapist and have worked with kids who have Angleman's syndrome. The students I have worked with have not learned to talk, but they understand and some can use picture boards to communicate or learn sign language. Each child with Angelman's is different. He will learn to walk and the seizures may disappear as he gets older.

It is hard to explain Angleman's syndrome, it is not too common so you will probably get alot of practice at explaining it, the more you find out about it. The most important thing is that he is in a loving home with people who will do their most for him so he can become the best person he can. I can't stress enough that the sooner he starts receiving services, the better it will be for him.

Good Luck to you and your family.

Lisa

[lrivetz]

http://www.phpf-fountain.org/useful_links.htm