9/11/2008
Hi Diane,

I'm not a behaviorist or diagnostician, but you may want to check
into some sensory therapy and possibly a weighted vest to see if
that "calms" Reagan's movement. Sometimes vestibular problems can
present movements that looks likes "tics", but isn't Tourettes. See
if your school or private Occupational Therapist can do a "Short
Sensory Profile". If he has some vestibular problems and is moving
his body - it would be very difficult for him to "still" his body
when told like the behaviorists suggests without some support
strategies in place. Our Jason (age 9) used weighted vests and
blankets (you can make or order from various places like Abilitations
or Pocket Full of Therapy)when he was younger. He still uses deep
pressure therapy, weighted lap blankets and sensory therapy for
fingers and hands as well as other strategies. Sensory issues are
pretty common for persons diagnosed with PWS.

Sounds like he has tons of energy (like a typical 5 year old!), which
is fantastic for a child with PWS. Try to focus his energy into more
constructive activies for life-long exercising routines; aerobics to
music for example.

Actually when Jason was younger, his speech therapist noticed he made
better sounds when he was involved in a gross motor activity. The
speech therapist actually did his therapy while bouncing him on a
therapy ball giving him movement. It made such a difference in his
sounds and the loudness of his sounds when he was moving.

If you can, try not to "feel bad for him", just concentrate on
strategies to help him. Honestly, he sounds like a great 5 year old
and don't beat yourself up about checking on the internet! If you
think he exhibits some complications, start using some of the
strategies listed to see if it helps - regardless of what you think
the diagnosis might be. You may want to check and review National's
webiste for school issues and complications. PWS carries over so
many complications into other syndromes and diagnosis it can be mind-
boggling. If I wrote down every PWS complication Jason has and
matched it to other sydromes - it would be 10 pages long!!

I hope this helps.
Take care,
Vickie Fetsko, Ohio

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In pws-autism@yahoogroups.com, rodise6@... wrote:

Hello everyone,
Just wondering if anyone has experienced "tics' with thier
children. Reagan (5 PWS/UPD) started to have uncontrollable shoulder
shrugging over the weekend, I have vidoe taped it to send to Dr.
Jennifer Miller.

He has always been a very active child. He never sits down. He does a
lot of jumping/lunging/bouncing when he speaks, and when he is
excited.

We have been working with a behaviorlist and she has suggested that
we keep reminding him to speak "with a still body"? this only helps
for a short time. He has had this behavior since he was very small
and able to walk. He also rubs his hands together alot, speaks very
fast, etc.

This morning was like watching a child that I have never met
before..he is moving constantly, like he just had a ton of sugar..
which we are very careful about his diet. He is not on any new meds,
same things..GH, mutivitimin, coromega, and L-carnitine. He has been
on these for quite some time, so I don't think that it is from meds.

I feel so bad for him, he already has so many issues with behavior,
poor social skills, etc. In doing some research..I know bad idea to
get on the internet for answers...could it be Tourette's? Actually it
really sounds more like Asperger's to me.? He fits the criteria to a
T for Asperger's.

Would like to hear any advice/thoughts/stories from other moms.
Diane Seely