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#121 From: rodise6@...
Date: Tue Sep 9, 2008 1:53 pm
Subject: Update/Concerns 		reaganseely
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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 la 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 



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#122 From: "jasonpws" <vickie_fetsko@...>
Date: Thu Sep 11, 2008 2:36 pm
Subject: Re: Update/Concerns 		jasonpws
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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



----------------------



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


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#123 From: "JenniferK" <moonandstars4@...>
Date: Wed Sep 10, 2008 4:59 pm
Subject: Re: Update/Concerns 		plantgirl1414
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Hi Diane,
I feel for you; our son Nolan (age 5) also has had many behavioral/social, etc. problems at school and it can be heartbreaking. 
 
Nolan has had some tic-type behaviors, such as wiggling his fingers, lots of eye blinking, rocking back and forth with his body, etc. which generates a lot of stares from strangers and other children.  These behaviors can be from a lot of things (excitement, anxiety, physical discomfort, constipation, etc.) but I believe for Nolan they often are just a part of his physical makeup.  We had him evaluated by a neurologist who said it was a tic disorder but not Tourette's.  He also had some increased tic-type behaviors when he was on Risperdal (excessive eye blinking, involuntary arm movements, tongue darting) that subsided once we switched him to Abilify. 
 
Nolan has been Dx'd with PDD-NOS (autism spectrum disorder.)  That helps school staff and others better understand these types of repetitive behaviors, which are common in autism.  Have you had a professional evaluate Reagan for autism spectrum disorder?  We went through that whole thing and Nolan didn't fit the DSM-IV criteria for Aspergers or classic autism, he was more atypical autism which put him in the PDD-NOS category.  I was initially upset at having another big Dx to deal with, but I can tell you that having the secondary Dx has greatly helped with additional services and funding, as well as people's understanding of Nolan's behaviors and needs.  There is also a huge amount of support out there for children on the autism spectrum.  You may want to pursue an evaluation by a qualified professional (my recommendation:  do not use school personnel for this) esp. if you feel he fits the criteria to a T. 
 
Another thought, sometimes additional sensory input can help calm some of those behaviors.  Perhaps add some evening massage or other sensory activity to his day to see if the behavior changes.  I think telling him to use a quiet body may not do the trick if it is involuntary/beyond his control.  I've heard it referred to as kind of like scratching an itch; the individuals are compelled to do it, they can find it hard to stop the behavior for long even when they are made aware that they are doing it.  I would be conscious of not drawing too much attention to it, which can create anxiety and cause the behavior to happen more; that has happened with Nolan on several occasions.
 
Hope this helps.
 
Best wishes to you,
Jennifer K.
Cedarburg, WI
mom to Amanda, almost 7 and Nolan, 5 w/PWS by deletion, plus PDD-NOS, ADHD, ODD, SID etc.
 
----- Original Message -----
Sent: Tuesday, September 09, 2008 8:53 AM
Subject: [pws-autism] Update/Concerns

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 la 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 



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#124 From: "Cindy Brooks" <cjbrooks58@...>
Date: Wed Sep 10, 2008 1:02 pm
Subject: Re: Update/Concerns 		cjpeek58
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Micah did this quiet often when he was younger. He has since outgrown just about all of the tics. He is on Vyvanse now for ADD. Don't know if that is what helps as far as tics go or not. Micah is only on the GH and Vyvanse.
Cindy
 
 
----- Original Message -----
Sent: Tuesday, September 09, 2008 8:53 AM
Subject: [pws-autism] Update/Concerns

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 la 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 



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