- Hi, my name is Donna and I live in Northern Virginia with my husband
and 4 children. My youngest daughter is 3 yrs 3 months with special
needs and I am suspecting has AS. Pregnancy and delivery were
normal, no birth defects or complications. Would not nurse, so we
went with a bottle but still had difficulty with
suck/swallow/breath. Seizure onset at 8 months, with multiple,
difficult to control seizure types; at that time she started showing
developmental delays, including gross motor delays and no babbling
or cooing. Normal MRI, metabolic and other tests. At this point she
is walking and running, but does a lot of toe walking and lurches
forward when she runs, with bent arms. No verbal language, some but
severely delayed receptive language. Irregular sleep patterns (read
gets up in the middle of the night to play), very hypermotoric with
very short attention span. Happy disposition, smiles a lot and often
laughs and giggles to herself as she plays. She loves water and
playing with dad and mom, but does not stop moving long enough to
develop friendships or relationships with many other people.
To those of you who have received the dx of AS: who gave the
diagnosis - a neuro, or developmental ped.? Do theses behaviors fit
your personal clinical experience with AS? What was the testing
(genetic) like - and did you have to push for it? I'm concerned that
her neuro is going to brush off my concerns - she had an abnormal
PETscan, so he's fixated on the "cortical dysplasia" theory and
attributes everything to that, even though her MRI's are normal, and
I'm afraid he won't even want to order genetic tests.
I'm really looking forward to learning from you.
Donna Becca's mom
- Hi Susan!
My little one Josh just turned 18 months on the 1st! Wow, such
close birthdays! Josh is also deletion +. We are just starting to
get hooked in to therapies, we have our intake appointment coming up
in a couple of weeks. He is crawling, sitting sturdy, feeding
himself dry foods, drinking from sippy cup, a whole plethora of
things. So, he is doing well, for not having any intervention yet.
Can't wait to get working on the walking! Oh please let this kid
walk soon! Moms of non-AS kids keep telling me, that mobility isn't
all it's cracked up to be, but I keep telling them, neither is
carrying them everywhere! :) We were just diagnosed on May 1st, so
this is all still very new to us, and sometimes overwhelming, and
sometimes very heartwrenching. We are in the San Francisco Bay Area.
Tell me more about Ian! When was he diagnosed?
--- In email@example.com, SUSAN WINFREY
>a few lines or either way is o.k. my son will be 18 months on 6-6,
> Sonya and Laurie,
> Girls please feel free to personally drop me
tell me where you two live, I'm from Grove, Oklahoma, Grand Lake. I
would love to compare notes and therapys. Are your angels
deletions?, Ian is.
> Laurie <greg.and.laurie@...> wrote:
> Welcome Sonya!
> I just recently found this little home as well. Our sweet little
> boy was just diagnosed at 17 months which was only 3 weeks ago.
> Can't wait to get to know you and your little one better!
> Take Care,
> -- In firstname.lastname@example.org, "sonyahedge"
> <sonyahedge@> wrote:
> > So glad I found you guys! My sweet boy was diagnosed at 1 year
> > and now is 17 months. I have quickly discovered my best
> > be through other parents. I have spent too much time on the net
> > while at work and will be back on Monday. Can not WAIT to make
> > connection in this world... that until now my son was the onlyone
> itequipment Family vacation special
> > seemed. All of the photos of the children are so beautiful and
> > resemble my son in many ways. I cannot wait to tell my husband
> that I
> > have found a wonderful resource for info and advice!!!!!!!! So
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