[Families of Angelman Syndrome] Re: New Member, Many Questions
- Hi Christine,
It sounds like you and your family have been through quite a lot in
the last year. Sending you more big ((Hugs))! Which test are they
doing on your little one? Are they doing the FISH test or a
methylation? Just curious.
Knock on wood, we have been very lucky with Josh. So far he has not
had any seizures, he sleeps very well, and while behind, he seems to
be catching on to his milestones.
There is a listserv. through UC San Diego where there are a lot of
families with AS conversing. You might check the Angelman Syndrome
Foundation Website as well.
Let me know if there is anything I can do for you. If you just want
to chat or vent or anything! It is so hard when there is something
wrong with your precious little one. It's been a shock to our family
and we are slowly coming out of the fog. It's amazing the wonderful
dispostion these little ones have, and how one little look and smile
can melt your heart in just one fraction of a second.
--- In firstname.lastname@example.org,
>age so we
> Emma has already started having seizures at about four weeks of
> have already done the EEG, as a matter of fact they did a five dayEEG with
> video monitoring! She is so delayed. She is just learning at ayear to roll
> over so we are getting PT, OT, and Speech already. She also hasa brain
> malformation called agenesis of the corpus collosum. She has acyst on her brain
> as well so we do MRI's every three months. I feel as if I havebeen drugged
> and cant wake up. I dont remember much of the last year of mylife. But
> everytime I look at her my heart melts. She always has a smilefor me.
> Thanks for you help and support.
> [Non-text portions of this message have been removed]