It sounds like you are on top of things! My daughter, Teagan,
finally has been diagnoised with Clinical Anglemans. I have
suspected Angelmans since she was 13mos. We have tailored all of
her therapies since she was 13mos as if this was her diagnosis.
First, Speech and OT are critical. Although she cannot say more
than about 5 words, she does at times parrot other words. She also
signs. Signing for Kids by Mickey Floden is a wonderful resource.
We tried the cheap talk, but due to her age it really didn't work.
But it is something we will try again later.
PT- Hippo therapy has long waiting lists and I believe they will
not start a child until they are 4yrs old. We do take Teagan to the
pool and she loves it. It helps her awareness of her body and also
relaxes her. I have had a hard time trying to find an aquatics
instructor that will work with a child this young, so we just go and
do the best we can.
Nutrition- I have a ton of opinions and info on this subject if you
My daughter had a BAER test that shows that she has a severe
processing problem visually. We cannot determine if she has an
acuity loss due to the fact she cannot speak. However, I have taken
her to a Developmental Optometrist who has given her prizm glasses.
The results were amazing!!! She stands straighter, looks around the
room and I believe is finally learning to use her vision. She also
receives Vision Therapy from our local school system.
Cranial Sacrial therapy worked for us from the age of 18 mos to 2
yrs. It did wonders for her constipation! The person we took her
to was 70 miles away and also believed in iridology (sp?) anyway,
she said some really disturbing things during one session (our last)
like "Teagan you are not going to die when you are 4...you're too
strong for that." I was blown away and never went back. Did it
help her seizures? Maybe, she had her first seizure this January.
Although she has had absence spells since she was about 6 months old.
I have read a lot of information and will be happy to share some
thoughts if you are interested. I have received alot of good info
from books on Autism just to help broaden my approach.
I hope this helps. I look forward to talking with you.
Sue Harris, Mom of Teagan 33 mos, little sister to Chris, Jim and
-- In firstname.lastname@example.org
> I'm new to this email list as my son Noah (13 months) was
> three weeks ago with AS (deletion positive).
> Noah was originally diagnosed at around 8 months with benign
> congenital hypotonia and with exotropia. It was only because we
> an extensive workup done of Noah which all came back normal (an
> EEG, complete metabolic analysis) that we decided to go to the
> step and do a genetic evaluation which came back positive for AS.
> While we've been involved in various therapies for the past 4
> due to his developmental delays, we're now looking to refocus our
> efforts to help our son learn and thrive to the best of his
> abilities with AS. In this regard, I had a number of questions
> I'd love to get some feedback on. I realize that all of these
> probably been discussed on this board time and time again, but we
> just recently signed up. Any constructive thoughts,
> recommendations or encouraging words would be greatly (and I mean
> greatly) appreciated.
> (1) Therapies -- Noah is presently in an Early Start Program, a
> state funded program in California, that provides him with two 1
> hour home visits a month (either PT, OT, or ST) and a weekly 1
> play session with other special needs children under 18 months of
> age who participate in the Early Start Program. Obviously, the PT
> is pretty critical right now but we're already thinking that we'll
> need to find a Speech Therapist who is focused on augmented
> communications or a combined OT/ST, but we'd like to get feedback
> the types of therapies that people have found to be most helpful
> various stages -- particularly in the 1 to 2 year old time frame.
> Among other things, we are wondering about things like water
> therapy, equine therapy, more focused ST (such as assisted or
> augmented communications) or other "alternative" therapies. Also,
> any thoughts on things that you wish you would have done or
> earlier would be extremely helpful.
> (2) Sleep Noah goes to sleep at approx. 8pm and doesn't have any
> problem going to sleep. Occasionally, he will wake up one time
> during the night in which he cries out and that can occur at
> 3am, 4am or 5am. He will then go back to sleep at wake up at
> We now use an empty bottle in his crib, which he uses as a
> pacifier. We're not sure how good this is as he is clearly using
> as a crutch but it generally helps him self-soothe and go back to
> sleep and will sleep through the night. Nonetheless, on occasion,
> his empty bottle will not soothe him and he wakes up crying once
> the middle of the night (either 3am, 4am, or 5am) and typically
> requires an ounce or two of water in his bottle and me coaxing him
> back to sleep which can take anywhere from 10-45 minutes. I
> that many AS kids have sleep issues, but is this something we
> be concerned about? Should we be thinking about using melatonin?
> (3) Cranial-Sacral therapy -- Noah hasn't had any seizures to date
> but we've heard from one person that they've had some success with
> reducing seizures through Cranial-Sacral therapy. Can anyone add
> any thoughts based on their experience, particularly with regard
> seizures? Does anyone have any other ideas on what, if anything,
> could be doing now to prevent seizures from occurring and/or
> the potential impacts from or occurrences of seizures?
> (4) Exotropia Surgery -- Noah has intermittent exotropia in both
> eyes and we've been patching for the past two months or so. While
> he generally tolerates the patching (probably due to his lack of
> fine motor ability to rip the patches off), we're wondering
> we should be thinking more seriously about surgery in order to
> correct the problem and improve his depth perception and, perhaps,
> gross and fine motor abilities. Three questions: (a) any
> on experience with the surgery either pro or con; (b) when is the
> best time to do the surgery; and (c) did anyone notice a profound
> difference in their child's motor, fine motor, and vision
> after the surgery?
> (5) Late Teething Noah got his first two teeth at 1 years old.
> We're wondering if this is AS related or whether Noah is just on
> outside of the normal curve for teething. Anyone have any
> or experience with this?
> (6) Books/Resources -- We're been gathering up a number of books
> regarding child development and special needs children, including
> Stanley Greenspan's "The Child with Special Needs." Does anyone
> have any recommendations on specific books that provide either
> insight or direction on teaching and working with a special needs
> child that seem particularly appropriate to kids with AS?
> Thanks so much for your help. While the past month has truly been
> the most difficult of our lives, we are looking forward to a
> future with our wonderful and beautiful son.
> All the best,
> Alyson Sinclair and David Lazerwitz, parents to Noah, 13mo (del +).