pws-autism : Messages : 98-127 of 145

PWSA (USA) has been getting many calls and emails about the Swine Flu and those with PWS. We have consulted our experts on this subject and have posted a letter from Janalee Heinemann along with an article on our homepage. Please read this information right away. It is located at http://www.pwsausa.org/research/H1N1Influenzaletter.htm

#126

From: "Barbara McManus" <barb.mcmanus@...>
Date: Wed Oct 28, 2009 6:53 pm
Subject: November 19th webinar registration is open!

bmcmanusmceer

Offline

All,

The next webinar will be on November 19^th at 8PM eastern time. (8PM EST, 7PM Central, 6PM Mountain and 5PM Pacific time)

The title is The Truth about Consequences: Why Traditional Methods of Punishment Do Not Work for Individuals with Prader-Willi Syndrome Co-presented by Mary K. Ziccardi and Evan Farrar. It is geared for all involved with school age children and older. Parents, relatives, teachers, aides, providers and any other person who might be involved with a person with PWS will learn much in this webinar!

The two presenters are fantastic and really know the topic. I hope everyone signs up for this one!

To read more about this webinar and to register, go to http://www.pwsausa.org/webinars/

#125

From: "Barbara McManus" <barb.mcmanus@...>
Date: Mon Oct 12, 2009 5:33 pm
Subject: Highlights from around USA

bmcmanusmceer

Offline

Hi, everyone!

I just wanted to thank our chapters for their efforts to help serve the families in their state. Tennessee, Texas and the Carolinas have recently formed strong chapters to support those families. If you have not joined your state chapter, please consider doing so today by clicking on this link. www.pwsausa.org/links/chapter.htm

Why join the state chapter?

The national organization, PWSA (USA), works to fund and support research, advocate on a national level, increase awareness, provide crisis counseling, among many other services. Your state chapter has the expertise needed to deal with issues that are specific to your state such as Medicaid waiver programs, Medicaid services, knowledge of health care providers in your area, and resources to help educate the personnel in your child’s school and supportive living arrangements. The state chapter also will hold educational meetings close to your home. These meetings provide an invaluable opportunity to receive support from other parents. The state chapters need your support to continue to be successful!

What if there is no state chapter in my state or my state chapter is not very active?

E-mail me, bmcmanus@..., or call me, 941-487-6734 or 800-926-4797. My goal is to have a chapter in EVERY STATE! More than one local support/focus group can exist in each state, but we need to join together to represent the families of the state.

Increased awareness and earlier diagnosis are increasing the number of people we know who have PWS. Many of these individuals are young, under the age 18, and the resources of our states will be strained as they try to support the needs of these children as they grow. We cannot wait until they all reach adulthood to become actively involved. Please consider helping me reach my goal! Call me today!

What is happening in my area?

Please look at www.pwsausa.org/conference to see what events are planned in your area.

Barbara McManus
Director of Family Support
Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
Telephone: 941-487-6734 or 800-926-4797
bmcmanus@...
www.pwsausa.org

Please note that the person sending this email is not a medical professional. Information in this email is not intended to be, nor is it, medical advice on the management or care of a person with Prader-Willi syndrome. Any opinions expressed are those of the sender alone, and may not represent the opinions of PWSA (USA). This email is intended to provide information only - not to diagnose or advocate particular treatment options. Any decision about treatment options (including, but not limited to, medical, nutritional, therapy, or psychiatric options) should be made in consultation with your own medical team.

#124

From: "Cindy Brooks" <cjbrooks58@...>
Date: Wed Sep 10, 2008 1:02 pm
Subject: Re: Update/Concerns

cjpeek58

Offline

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 -----

From: rodise6@...

To: pwsa-usa-0-5yr@yahoogroups.com ; pws-autism@yahoogroups.com ; PWSA-USA-6-12yr@yahoogroups.com ; HolisticPWS@yahoogroups.com

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

Looking for spoilers and reviews on the new TV season? Get AOL's ultimate guide to fall TV.

#123

From: "JenniferK" <moonandstars4@...>
Date: Wed Sep 10, 2008 4:59 pm
Subject: Re: Update/Concerns

plantgirl1414

Offline

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 -----

From: rodise6@...

To: pwsa-usa-0-5yr@yahoogroups.com ; pws-autism@yahoogroups.com ; PWSA-USA-6-12yr@yahoogroups.com ; HolisticPWS@yahoogroups.com

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

Looking for spoilers and reviews on the new TV season? Get AOL's ultimate guide to fall TV.

#122

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

jasonpws

Offline

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

#121

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

reaganseely

Offline

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

Looking for spoilers and reviews on the new TV season? Get AOL's ultimate guide to fall TV.

#120

From: "Terri & Howard Schlange" <familyof4@...>
Date: Thu Aug 21, 2008 1:20 am
Subject: Tina - Kevin's seizures

terri66801

Offline

Tina,

Patrick,age 10, may be having seizures. What happens when Kevin has a seizure? Patrick's seem to happen when he's trying to wake up. It's like he can't wake up and starts shaking a bit and seems incoherent. This happened at school last spring, but he also didn't seemed to be breathing and was turning blue. That part hadn't happened before. They have not been dx'd as seizures so we don't know what is happening for sure.

Terri

#119

From: "Cindy Brooks" <cjbrooks58@...>
Date: Wed Aug 20, 2008 11:45 pm
Subject: Re: Just got the duel dx

cjpeek58

Offline

Thanks, I had always thought Micah showed many Autism traits, but never really thought about getting the dx for it. Just figured it was the PWS showing up. It seems alot of the chromosomal syndromes have overlapping symptoms. Micah is also ADD. He is on Rilalin LA. Believe it or not, that seems to help so much with the behaviors and the food issues. But also seems the pro's don't think it is ADD, its just again overlapping symptoms of PWS. Guess we'll never know for sure.

Thanks again,

Cindy

----- Original Message -----

From: JenniferK

To: pws-autism@yahoogroups.com

Sent: Wednesday, August 20, 2008 3:51 PM

Subject: Re: [pws-autism] Just got the duel dx

Hi Cindy,

You're welcome. At first I felt a little uncomfortable playing up the autism piece since Nolan's absolute primary Dx is PWS, but since so many people don't get the PWS piece aside from the food issues, I lean on their understanding of autism to drive many points home, especially when it comes to behaviors, social issues, lack of interests, and sensory needs. These often are areas of overlap with PWS anyway, and when I approach it from the autism side of things, along with his official Dx documentation, people seem more able to wrap their minds around those issues as they relate to the child because they have attended autism training, seen other kids with it, etc. Our school district is setting up a special autism support group with a behavior specialist; since Nolan is the only child in the district with PWS, we would not have received this type of help with only the PWS Dx. FYI, we got the Dx from a state-certified psychologist and she did a very thorough report with justifications for her multiple diagnoses, so no one can question anything.

Good luck!

Jennifer

----- Original Message -----

From: Cindy Brooks

To: pws-autism@yahoogroups.com

Sent: Wednesday, August 20, 2008 3:26 PM

Subject: Re: [pws-autism] Just got the duel dx

Wow, thanks for all the info. Will check into a Texas group.

Cindy

----- Original Message -----

From: JenniferK

To: pws-autism@yahoogroups.com

Sent: Wednesday, August 20, 2008 1:58 PM

Subject: Re: [pws-autism] Just got the duel dx

Our son Nolan has a dual Dx of PDD-NOS (autism spectrum) along with PWS. He has an IQ in the normal range. The school seems to be taking notice and modifying his curriculum and behavior approaches much more than when he was "only" PWS. We also have a big program here in Wisconsin that provides 20 hours of in-home therapy related to social and play skills for children on the autism spectrum, that is completely paid for via an Autism Waiver at no cost to the parents, so therapists will come to your home and work with your child on anything related to the disability such as social and play skills, increasing interests, turn taking, potty training, and ABA stuff. Ask at the state level whether Texas has such a program. Google "autism Texas" and contact your state autism society or local chapter for advice. Services vary widely depending on where you live. My sister's son has Asperger's (autism spectrum also) but lives in Maine where no such program exists. Overall, though, there are many programs available for kids on the spectrum that are not available for PWS because it is so rare. Kids with autism definitely get more services than PWS because it is so much more widely known. And, you can insist on specific methodologies with the school such as Direct Instruction and Discrete Trial Method because those are research-proven methodologies with autism; not so for PWS. We are sad that Nolan qualifies as having an autism spectrum disorder, but acknowledging the dual Dx and putting it on all his paperwork including the IEP has made a big difference in many ways for getting him what he needs. I also have been able to tap into funding sources available for families with a child on the autism spectrum; I found a non-profit agency in our state by searching online, applied and received a $500 grant toward autism-related services, most of which overlap with PWS, such as aquatic therapy, hippotherapy, sensory integration techniques or equipment, craniosacral therapy, social skills training, etc.

Hope this helps. Best wishes,

Jennifer K.

Cedarburg, WI

mom to Amanda, 6 and Nolan, 5 (PWS by deletion plus PDD-NOS, ADHD, SID, ODD)

----- Original Message -----

From: cjpeek58

To: pws-autism@yahoogroups.com

Sent: Tuesday, August 19, 2008 9:33 PM

Subject: [pws-autism] Just got the duel dx

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

#118

From: "Cindy Brooks" <cjbrooks58@...>
Date: Wed Aug 20, 2008 11:46 pm
Subject: Re: Just got the duel dx

cjpeek58

Offline

I'm gonna have to look that one up. We will be having another ARD shortly to get the Autism dx added to it.

Thanks,

Cindy

----- Original Message -----

From: Paul & Robin Barrett

To: pws-autism@yahoogroups.com

Sent: Wednesday, August 20, 2008 3:59 PM

Subject: Re: [pws-autism] Just got the duel dx

Right now the "gold standard" treatment for autism is Applied Behavior Analysis, or ABA. It is very one-on-one labor intensive, so it is expensive. Check it out and, if you want your son to get it, ask that it be included in his IEP. Schools are reluctant so you may have to be assertive. Ask for a minimum of 3 hours per day of "discrete trials" as part of any ABA program. Good luck, and don't be afraid to take a strong stand.

----- Original Message -----

From: cjpeek58

To: pws-autism@yahoogroups.com

Sent: Tuesday, August 19, 2008 6:33 PM

Subject: [pws-autism] Just got the duel dx

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

__________ Information from ESET Smart Security, version of virus signature database 3369 (20080819) __________

The message was checked by ESET Smart Security.

http://www.eset.com

#117

From: "JenniferK" <moonandstars4@...>
Date: Wed Aug 20, 2008 8:51 pm
Subject: Re: Just got the duel dx

plantgirl1414

Offline

Hi Cindy,

You're welcome. At first I felt a little uncomfortable playing up the autism piece since Nolan's absolute primary Dx is PWS, but since so many people don't get the PWS piece aside from the food issues, I lean on their understanding of autism to drive many points home, especially when it comes to behaviors, social issues, lack of interests, and sensory needs. These often are areas of overlap with PWS anyway, and when I approach it from the autism side of things, along with his official Dx documentation, people seem more able to wrap their minds around those issues as they relate to the child because they have attended autism training, seen other kids with it, etc. Our school district is setting up a special autism support group with a behavior specialist; since Nolan is the only child in the district with PWS, we would not have received this type of help with only the PWS Dx. FYI, we got the Dx from a state-certified psychologist and she did a very thorough report with justifications for her multiple diagnoses, so no one can question anything.

Good luck!

Jennifer

----- Original Message -----

From: Cindy Brooks

To: pws-autism@yahoogroups.com

Sent: Wednesday, August 20, 2008 3:26 PM

Subject: Re: [pws-autism] Just got the duel dx

Wow, thanks for all the info. Will check into a Texas group.

Cindy

----- Original Message -----

From: JenniferK

To: pws-autism@yahoogroups.com

Sent: Wednesday, August 20, 2008 1:58 PM

Subject: Re: [pws-autism] Just got the duel dx

Our son Nolan has a dual Dx of PDD-NOS (autism spectrum) along with PWS. He has an IQ in the normal range. The school seems to be taking notice and modifying his curriculum and behavior approaches much more than when he was "only" PWS. We also have a big program here in Wisconsin that provides 20 hours of in-home therapy related to social and play skills for children on the autism spectrum, that is completely paid for via an Autism Waiver at no cost to the parents, so therapists will come to your home and work with your child on anything related to the disability such as social and play skills, increasing interests, turn taking, potty training, and ABA stuff. Ask at the state level whether Texas has such a program. Google "autism Texas" and contact your state autism society or local chapter for advice. Services vary widely depending on where you live. My sister's son has Asperger's (autism spectrum also) but lives in Maine where no such program exists. Overall, though, there are many programs available for kids on the spectrum that are not available for PWS because it is so rare. Kids with autism definitely get more services than PWS because it is so much more widely known. And, you can insist on specific methodologies with the school such as Direct Instruction and Discrete Trial Method because those are research-proven methodologies with autism; not so for PWS. We are sad that Nolan qualifies as having an autism spectrum disorder, but acknowledging the dual Dx and putting it on all his paperwork including the IEP has made a big difference in many ways for getting him what he needs. I also have been able to tap into funding sources available for families with a child on the autism spectrum; I found a non-profit agency in our state by searching online, applied and received a $500 grant toward autism-related services, most of which overlap with PWS, such as aquatic therapy, hippotherapy, sensory integration techniques or equipment, craniosacral therapy, social skills training, etc.

Hope this helps. Best wishes,

Jennifer K.

Cedarburg, WI

mom to Amanda, 6 and Nolan, 5 (PWS by deletion plus PDD-NOS, ADHD, SID, ODD)

----- Original Message -----

From: cjpeek58

To: pws-autism@yahoogroups.com

Sent: Tuesday, August 19, 2008 9:33 PM

Subject: [pws-autism] Just got the duel dx

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

#116

From: Paul & Robin Barrett <paulbarrett@...>
Date: Wed Aug 20, 2008 8:59 pm
Subject: Re: Just got the duel dx

paulbarrett@...

Right now the "gold standard" treatment for autism is Applied Behavior Analysis, or ABA. It is very one-on-one labor intensive, so it is expensive. Check it out and, if you want your son to get it, ask that it be included in his IEP. Schools are reluctant so you may have to be assertive. Ask for a minimum of 3 hours per day of "discrete trials" as part of any ABA program. Good luck, and don't be afraid to take a strong stand.

----- Original Message -----

From: cjpeek58

To: pws-autism@yahoogroups.com

Sent: Tuesday, August 19, 2008 6:33 PM

Subject: [pws-autism] Just got the duel dx

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

__________ Information from ESET Smart Security, version of virus signature database 3369 (20080819) __________

The message was checked by ESET Smart Security.

http://www.eset.com

#115

From: "Cindy Brooks" <cjbrooks58@...>
Date: Wed Aug 20, 2008 8:26 pm
Subject: Re: Just got the duel dx

cjpeek58

Offline

Wow, thanks for all the info. Will check into a Texas group.

Cindy

----- Original Message -----

From: JenniferK

To: pws-autism@yahoogroups.com

Sent: Wednesday, August 20, 2008 1:58 PM

Subject: Re: [pws-autism] Just got the duel dx

Our son Nolan has a dual Dx of PDD-NOS (autism spectrum) along with PWS. He has an IQ in the normal range. The school seems to be taking notice and modifying his curriculum and behavior approaches much more than when he was "only" PWS. We also have a big program here in Wisconsin that provides 20 hours of in-home therapy related to social and play skills for children on the autism spectrum, that is completely paid for via an Autism Waiver at no cost to the parents, so therapists will come to your home and work with your child on anything related to the disability such as social and play skills, increasing interests, turn taking, potty training, and ABA stuff. Ask at the state level whether Texas has such a program. Google "autism Texas" and contact your state autism society or local chapter for advice. Services vary widely depending on where you live. My sister's son has Asperger's (autism spectrum also) but lives in Maine where no such program exists. Overall, though, there are many programs available for kids on the spectrum that are not available for PWS because it is so rare. Kids with autism definitely get more services than PWS because it is so much more widely known. And, you can insist on specific methodologies with the school such as Direct Instruction and Discrete Trial Method because those are research-proven methodologies with autism; not so for PWS. We are sad that Nolan qualifies as having an autism spectrum disorder, but acknowledging the dual Dx and putting it on all his paperwork including the IEP has made a big difference in many ways for getting him what he needs. I also have been able to tap into funding sources available for families with a child on the autism spectrum; I found a non-profit agency in our state by searching online, applied and received a $500 grant toward autism-related services, most of which overlap with PWS, such as aquatic therapy, hippotherapy, sensory integration techniques or equipment, craniosacral therapy, social skills training, etc.

Hope this helps. Best wishes,

Jennifer K.

Cedarburg, WI

mom to Amanda, 6 and Nolan, 5 (PWS by deletion plus PDD-NOS, ADHD, SID, ODD)

----- Original Message -----

From: cjpeek58

To: pws-autism@yahoogroups.com

Sent: Tuesday, August 19, 2008 9:33 PM

Subject: [pws-autism] Just got the duel dx

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

#114

From: "Cindy Brooks" <cjbrooks58@...>
Date: Wed Aug 20, 2008 7:54 pm
Subject: Re: Just got the duel dx

cjpeek58

Offline

Hey Tina, thanks for the info.

Cindy

----- Original Message -----

From: TTerr100@...

To: pws-autism@yahoogroups.com

Sent: Wednesday, August 20, 2008 12:35 PM

Subject: Re: [pws-autism] Just got the duel dx

HEY CINDY, IT'S ME , TINA I AM IN THIS GROUP ALSO.. YES WE FOUND OUT KEVIN HAS AUTISM TRAITS.. KEVIN IS PWS UPD BUT HAS MR. ON THE MR IS PROBABLY BECAUSE HE CANT ACTUALLY COMMUNICATE QUESTIONS LIKE MANY WOULD OR ANSWER THEM WITH MORE THAN A FEW WORDS. BUT HE IS SMART IN OTHER THINGS . AND GOT A MEMORY OUT OF THE BOOK. CAN WATCH LENGTHLY MOVIES SUCH AS ACTION MOVIES AND UNDERSTAND.. KEVIN UNDERSTANDS ALOT.. I KNOW HERE IN LOUISIANA THEY FINALLY ARE RECOGNIZING AUTISM AS A DISABILITY .. BUT WE HAVE ALWAYS LISTED IT AS A PROBLEM WITH KEVIN ALONG WITH HIS PWS AND SEIZURES.. I HOPE YOU FIND SOME KIND OF HELP FOR MICAH.. TINA

In a message dated 8/20/2008 4:16:12 A.M. Central Daylight Time, cjbrooks58@comcast.net writes:

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

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

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#113

From: "Cindy Brooks" <cjbrooks58@...>
Date: Wed Aug 20, 2008 7:53 pm
Subject: Re: Just got the duel dx

cjpeek58

Offline

Right now since PWS isn't recognized in Texas, Micah is under "other health impared". Hopefully this will help.....

----- Original Message -----

From: Jill Boughton

To: pws-autism@yahoogroups.com

Sent: Wednesday, August 20, 2008 8:57 AM

Subject: Re: [pws-autism] Just got the duel dx

We too added the autism spectrum diagnosis to April's IEP a couple years ago. (She just graduated from high school last May.) She too is high-functioning and didn't qualify as MR, so the only way she qualified for services in Indiana was under "orthopedic impairment" because of the low muscle tone and poor handwriting. Once she qualified under orthopedic, she got a superb teacher of record who educated herself about PWS and did an excellent job for April. The problem was that when regular teachers saw "orthopedic impairment"--the ones who didn't bother to read the whole IEP, and, sadly, they are many--, they expected a child in a wheelchair but not a child with behaviors of any sort. Whereas "autism" has become so common and so well-known that it gave them a better handle on what to expect and what accommodations might be necessary, and perhaps prompted them to read further.

Jill

cjpeek58 <cjbrooks58@comcast.net> wrote:

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

#112

From: "Cindy Brooks" <cjbrooks58@...>
Date: Wed Aug 20, 2008 7:29 pm
Subject: Re: Just got the duel dx

cjpeek58

Offline

Micah is already in a kinda self contained class. Their five or maybe six other kids. With two aids and the teacher. At least that is what he has had since 2nd grade. Don't know what will happen in high school. Have to go and get schedule and stuff and meet the teacher and check out the school tomorrow nite about 6. Micah is mainstreamed for PE and History and Science though.

Can't wait for yall to get here. I didn't realize Matt had an autism dx also. Thru a Dr or the school??

----- Original Message -----

From: Bobbi Harrigan-Surgenor

To: pws-autism@yahoogroups.com

Sent: Wednesday, August 20, 2008 5:26 AM

Subject: Re: [pws-autism] Just got the duel dx

Hey Cindy, With Matthew we're able to get him in a RNC(reduced Numbers Class-Autistic class. Many of the kids go out and are main streamed but they get that extra one 2 one one help too. Kinda like resourse classes..We CHOSE to have MJ self contained because of his behavior and its makes for a better day for him.He has tons of help this year and so far I'm loving this new school..He has APE and reg PE...And if he behaves he wants to go to the Home Ec. class... They have a Vaccum ..LOL...He doesn't have a child specific this year because they have tons of assistants in the class..Hopefully this won't bite me in the butt next yr or for high school.....This should also open some doors for any state funds &/ programs he will be entitled too... See You in 2 wks and we'll talk more...

Bobbi ~

Mom to Matthew 13 pws/upd

'Life isn't about how to survive the storm,

but learning how to dance in the rain'

--- On Tue, 8/19/08, cjpeek58 <cjbrooks58@comcast.net> wrote:

From: cjpeek58 <cjbrooks58@comcast.net>
Subject: [pws-autism] Just got the duel dx
To: pws-autism@yahoogroups.com
Date: Tuesday, August 19, 2008, 9:33 PM

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

#111

From: "JenniferK" <moonandstars4@...>
Date: Wed Aug 20, 2008 6:58 pm
Subject: Re: Just got the duel dx

plantgirl1414

Offline

Our son Nolan has a dual Dx of PDD-NOS (autism spectrum) along with PWS. He has an IQ in the normal range. The school seems to be taking notice and modifying his curriculum and behavior approaches much more than when he was "only" PWS. We also have a big program here in Wisconsin that provides 20 hours of in-home therapy related to social and play skills for children on the autism spectrum, that is completely paid for via an Autism Waiver at no cost to the parents, so therapists will come to your home and work with your child on anything related to the disability such as social and play skills, increasing interests, turn taking, potty training, and ABA stuff. Ask at the state level whether Texas has such a program. Google "autism Texas" and contact your state autism society or local chapter for advice. Services vary widely depending on where you live. My sister's son has Asperger's (autism spectrum also) but lives in Maine where no such program exists. Overall, though, there are many programs available for kids on the spectrum that are not available for PWS because it is so rare. Kids with autism definitely get more services than PWS because it is so much more widely known. And, you can insist on specific methodologies with the school such as Direct Instruction and Discrete Trial Method because those are research-proven methodologies with autism; not so for PWS. We are sad that Nolan qualifies as having an autism spectrum disorder, but acknowledging the dual Dx and putting it on all his paperwork including the IEP has made a big difference in many ways for getting him what he needs. I also have been able to tap into funding sources available for families with a child on the autism spectrum; I found a non-profit agency in our state by searching online, applied and received a $500 grant toward autism-related services, most of which overlap with PWS, such as aquatic therapy, hippotherapy, sensory integration techniques or equipment, craniosacral therapy, social skills training, etc.

Hope this helps. Best wishes,

Jennifer K.

Cedarburg, WI

mom to Amanda, 6 and Nolan, 5 (PWS by deletion plus PDD-NOS, ADHD, SID, ODD)

----- Original Message -----

From: cjpeek58

To: pws-autism@yahoogroups.com

Sent: Tuesday, August 19, 2008 9:33 PM

Subject: [pws-autism] Just got the duel dx

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

#110

From: TTerr100@...
Date: Wed Aug 20, 2008 1:35 pm
Subject: Re: Just got the duel dx

TTerr100@...

HEY CINDY, IT'S ME , TINA I AM IN THIS GROUP ALSO.. YES WE FOUND OUT KEVIN HAS AUTISM TRAITS.. KEVIN IS PWS UPD BUT HAS MR. ON THE MR IS PROBABLY BECAUSE HE CANT ACTUALLY COMMUNICATE QUESTIONS LIKE MANY WOULD OR ANSWER THEM WITH MORE THAN A FEW WORDS. BUT HE IS SMART IN OTHER THINGS . AND GOT A MEMORY OUT OF THE BOOK. CAN WATCH LENGTHLY MOVIES SUCH AS ACTION MOVIES AND UNDERSTAND.. KEVIN UNDERSTANDS ALOT.. I KNOW HERE IN LOUISIANA THEY FINALLY ARE RECOGNIZING AUTISM AS A DISABILITY .. BUT WE HAVE ALWAYS LISTED IT AS A PROBLEM WITH KEVIN ALONG WITH HIS PWS AND SEIZURES.. I HOPE YOU FIND SOME KIND OF HELP FOR MICAH.. TINA

In a message dated 8/20/2008 4:16:12 A.M. Central Daylight Time, cjbrooks58@... writes:

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

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

Yahoo! Groups Links

<*> To visit your group on the web, go to:
http://groups.yahoo.com/group/pws-autism/

<*> Your email settings:
Individual Email | Traditional

<*> To change settings online go to:
http://groups.yahoo.com/group/pws-autism/join
(Yahoo! ID required)

<*> To change settings via email:
mailto:pws-autism-digest@yahoogroups.com
mailto:pws-autism-fullfeatured@yahoogroups.com

<*> To unsubscribe from this group, send an email to:
pws-autism-unsubscribe@yahoogroups.com

<*> Your use of Yahoo! Groups is subject to:
http://docs.yahoo.com/info/terms/

It's only a deal if it's where you want to go. Find your travel deal here.

#109

From: Jill Boughton <jillaprilb@...>
Date: Wed Aug 20, 2008 1:57 pm
Subject: Re: Just got the duel dx

jillaprilb@...

We too added the autism spectrum diagnosis to April's IEP a couple years ago. (She just graduated from high school last May.) She too is high-functioning and didn't qualify as MR, so the only way she qualified for services in Indiana was under "orthopedic impairment" because of the low muscle tone and poor handwriting. Once she qualified under orthopedic, she got a superb teacher of record who educated herself about PWS and did an excellent job for April. The problem was that when regular teachers saw "orthopedic impairment"--the ones who didn't bother to read the whole IEP, and, sadly, they are many--, they expected a child in a wheelchair but not a child with behaviors of any sort. Whereas "autism" has become so common and so well-known that it gave them a better handle on what to expect and what accommodations might be necessary, and perhaps prompted them to read further.

Jill

cjpeek58 <cjbrooks58@...> wrote:

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

#108

From: Bobbi Harrigan-Surgenor <mjspws5395@...>
Date: Wed Aug 20, 2008 10:26 am
Subject: Re: Just got the duel dx

mjspws5395

Offline

Hey Cindy, With Matthew we're able to get him in a RNC(reduced Numbers Class-Autistic class. Many of the kids go out and are main streamed but they get that extra one 2 one one help too. Kinda like resourse classes..We CHOSE to have MJ self contained because of his behavior and its makes for a better day for him.He has tons of help this year and so far I'm loving this new school..He has APE and reg PE...And if he behaves he wants to go to the Home Ec. class... They have a Vaccum ..LOL...He doesn't have a child specific this year because they have tons of assistants in the class..Hopefully this won't bite me in the butt next yr or for high school.....This should also open some doors for any state funds &/ programs he will be entitled too... See You in 2 wks and we'll talk more...

Bobbi ~

Mom to Matthew 13 pws/upd

'Life isn't about how to survive the storm,

but learning how to dance in the rain'

--- On Tue, 8/19/08, cjpeek58 <cjbrooks58@...> wrote:

From: cjpeek58 <cjbrooks58@...>
Subject: [pws-autism] Just got the duel dx
To: pws-autism@yahoogroups.com
Date: Tuesday, August 19, 2008, 9:33 PM

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

#107

From: "cjpeek58" <cjbrooks58@...>
Date: Wed Aug 20, 2008 2:33 am
Subject: Just got the duel dx

cjpeek58

Offline

Hi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks

#106

From: "Terri & Howard Schlange" <familyof4@...>
Date: Tue Jul 1, 2008 4:23 am
Subject: Vaccines, mitochondria and autism connection

terri66801

Offline

NEW YORK TIMES

June 28, 2008
Experts to Discuss a Puzzling Autism Case, as a Second Case Looms
By GARDINER HARRIS

Federal health officials on Sunday will call together some of the
world's leading experts on an obscure disease to discuss the
controversial case of a 9-year-old girl from Athens, Ga., who became
autistic after receiving numerous vaccinations.

But the government has so far kept quiet a second case that some say
is more disturbing and more relevant to the meeting.

On Jan. 11, a 6-year-old girl from Colorado received FluMist, a flu
vaccine, and about a week later "became weak with multiple episodes of
falling to ground" and "difficulty walking," according to a case
report filed with federal health officials and obtained by The New
York Times.

The girl grew increasingly weak and feverish and "became more limp,
appears sleepy, acts as if drunk," the report said. She was
hospitalized and underwent surgery and was finally withdrawn from life
support. She died on April 5, according to the report.

Both the 9- and 6-year-olds had mitochondrial disorders, a spectrum of
genetic diseases that have received almost no attention from federal
health officials. The 9-year-old, Hannah Poling, was 19 months old and
developing normally in 2000 when she received five shots against nine
infectious diseases. Two days later, she developed a fever, cried
inconsolably and refused to walk. In the next seven months, she
spiraled downward, and in 2001 doctors diagnosed autism.

No one knows whether vaccinations had anything to do with the girls'
health problems, and the scientific significance of individual cases
is always difficult to assess. But suggestions that mitochondrial
disorders could be set off or worsened by vaccinations, and that the
disorders might be linked to autism, prompted the meeting on Sunday
and has brought the disorders sudden national attention.

Those scheduled to present at the meeting who were contacted by The
Times said they knew nothing of the Colorado case.

"I haven't heard about this case," said Dr. Thomas R. Insel, director
of the National Institute of Mental Health and the day's first speaker.

Dr. John Iskander, acting director of the immunization safety office
at the Centers for Disease Control and Prevention, said his group had
studied the Colorado case closely but did not discuss it with those
presenting at the meeting and had no plans to present the case to the
conference, although he and members of his group will attend.

"Part of the consideration is, what was the best use of that time?"
Dr. Iskander said in an interview. "To a large extent, the judgment of
the meeting organizers was to have the experts in these conditions �
which are not vaccine safety experts � to have most of the agenda."

Dr. Iskander said the Clinical Immunization Safety Assessment Network
of the disease agency reviewed the medical records related to the
Colorado and Georgia cases, searched for similar reports and asked
vaccine manufacturers if they knew of similar cases. A spokeswoman for
MedImmune, the maker of FluMist, declined to comment.

The team noted that the Colorado child had not experienced any
problems with her previous vaccinations and was relatively old at the
time of her diagnosis. Dr. Iskander said the group had concluded "that
this is another case that points to the need of better data on the
risks and benefits of vaccinations in children with these rare disorders."

Study after study has failed to show any link between vaccines and
autism, but many parents of autistic children are convinced that
vaccines � usually given around the time autism becomes apparent � are
to blame.

Parents and a small group of doctors have offered a variety of
scientific explanations in recent years to try to explain why they
think vaccines may cause or contribute to autism. Among the first was
that the measles vaccine caused a low-level measles infection that
affected children's brains. The science underlying that theory has
since been discredited.

The next theory was that a mercury-containing vaccine preservative,
thimerosal, poisoned their brains, causing autism. Multiple studies
have failed to find any relationship between thimerosal exposure and
autism, and nearly seven years after the preservative was removed from
childhood vaccines, autism rates seem unaffected.

The Poling case, however, offered advocates a new theory: that
vaccines may cause or contribute to an underlying mitochondrial
disorder, which in turn causes autism. Although autism is common among
children with mitochondrial disorders, several experts in the
disorders dismissed the notion that vaccines may cause the disease,
which is widely understood to have a genetic origin.

"After caring for hundreds of children with mitochondrial disease, I
can't recall a single one that had a complication from vaccination,"
said Dr. Darryl De Vivo, a professor of neurology and pediatrics at
Columbia University who will present at the meeting on Sunday and is
one of the premier experts in the field.

Mitochondria, which serve as the energy factories of cells, have their
own genetic material that is passed directly from mother to child.
Flaws in this material are relatively common. As those flaws multiply,
they interfere with mitochondrial function.

Dr. De Vivo said as many as 700,000 people in the United States had
flawed mitochondria, and in roughly 30,000 of them the genetic flaws
were expansive enough to cause disease.

Diseased mitochondria may appear in some parts of the body but not
others, making diagnosis difficult and predictions of symptoms
impossible. Infants with the disease may suffer frequent seizures and
delayed motor and mental development, be short in stature and have
hearing and eye movement problems. But in most sufferers, symptoms do
not become apparent for years and may first present as weak or stiff
muscles, poor coordination or alterations of posture.

Many experts said infections could be so devastating to those with
mitochondrial disorders that the risks associated with vaccines were
far outweighed by the benefits. Still, none dismissed the notion that
a vaccine could cause a decline in such children.

"Most of these kids get a common cold, and either during the cold or
soon after, the parents notice a drastic deterioration," said Dr.
Bruce H. Cohen, a neurologist at the Cleveland Clinic.

Margaret Dunkle, a senior fellow at the Center for Health Services
Research and Policy at George Washington University and great-aunt to
Hannah Poling, said she hoped that the researchers on Sunday would
agree on studies that would help "to identify who those children are
for whom vaccination might cause or worsen a mitochondrial dysfunction
so that we can figure out a way to immunize those children safely."

"What's the schedule and number of vaccines?" Ms. Dunkle asked.
"What's the content of those vaccines?"

Dr. Cohen said answering such questions was all but impossible because
of the difficulties associated with diagnosing mitochondrial disorders.

"There is no test available right now to screen for mitochondrial
disorders that is anywhere near sensitive or specific," Dr. Cohen
said, "so the whole concept of screening prior to vaccination is a
fantasy."

Still, a discussion about the possible links between mitochondrial
disorders, autism and vaccination is needed, said Dr. Insel of the
mental health institute.

"We're talking about two things we don't understand very well,
mitochondrial disorder and autism, and putting them together," Dr.
Insel said. "It's like two drunks holding each other up."

The meeting, in Indianapolis, is being sponsored by the mental health
institute, the Food and Drug Administration, the C.D.C., the National
Institutes of Health, the Department of Health and Human Services and
the National Institute of Neurological Disorders and Stroke.

Whatever the result of the meeting, Charles A. Mohan Jr., executive
director of the United Mitochondrial Disease Foundation, a nonprofit
research and educational group, said he was delighted by the attention
being brought to the disease. Mr. Mohan's daughter died of the disease
when she was 15 after years of worsening seizures.

"We're hoping the result of this meeting is at least the realization
that more money is needed for research to connect these dots," Mr.
Mohan said.

#105

From: "Linda Gourash" <Wfgourash@...>
Date: Tue May 27, 2008 9:27 pm
Subject: RE: teeth grinding

Wfgourash@...

Glad to hear from you. Give us all some follow up on how it goes!

Linda M. Gourash, MD

Developmental and Behavioral Pediatrics

Pittsburgh Partnership,

Specialists in Prader-Willi Syndrome

PWSA Clinical Advisory Board

PWSA Board of Directors

412 831 0355 x 534

From: pws-autism@yahoogroups.com [mailto:pws-autism@yahoogroups.com] On Behalf Of Terri & Howard Schlange
Sent: Tuesday, May 27, 2008 10:43 AM
To: pws-autism@yahoogroups.com
Subject: Re: [pws-autism] teeth grinding

Thanks, Dr. Gourash! Those web sites look interesting. We had a vibrating chew toy when Patrick was little that he seemed to like.

----- Original Message -----

From: Linda Gourash

To: pws-autism@yahoogroups.com

Cc: JaniceForsterMD@... ; 'Janalee Heinemann'

Sent: Friday, May 23, 2008 1:45 PM

Subject: RE: [pws-autism] teeth grinding

You might want to try chewy tubes:

http://www.affordabletherapysolutions.com/index.asp?pageaction=viewcats&category=5

They can meet the oral motor need without damaging teeth.

You may also wish to look at other oral motor stimulation with vibrating chew toys.

http://www.beyondplay.com/CATALOG/ORA1.HTM

Linda M. Gourash, MD

Pittsburgh Partnership

Specialists for Prader-Willi Syndrome

pws@...

Voice mail: 412 831-0355 x 534

From: pws-autism@yahoogroups.com [mailto:pws-autism@yahoogroups.com] On Behalf Of Terri & Howard Schlange
Sent: Saturday, May 17, 2008 10:23 PM
To: pws-autism@yahoogroups.com
Subject: Re: [pws-autism] teeth grinding

Hi Holly,

I'm Terri - Mom to Patrick, age 10. He has severe autism so he's completely non-verbal, cognitively age one and still in diapers. Patrick grinds his teeth also during the day when he's mad. We haven't done anything about this either b/c Patrick also wouldn't keep a mouth guard in. I'm not able to help you, but just wanted to let you know I'm out here in Kansas if you ever need anything!

Terri Schlange

----- Original Message -----

From: hollym2

To: pws-autism@yahoogroups.com

Sent: Tuesday, May 13, 2008 4:24 PM

Subject: [pws-autism] teeth grinding

Hi everyone - I am new to this site. I have a 15 year old daughter with
PWS and autism. She is grinding her teeth at such a great rate that her
dentist said by the time she is 30 she will have no teeth. So far he
has no way of preventing this as she functions at about a 2 year old
level and will not leave a mouth guard in. Wondering if anyone else has
enountered this problem. Holly

#104

From: "Terri & Howard Schlange" <familyof4@...>
Date: Tue May 27, 2008 2:43 pm
Subject: Re: teeth grinding

terri66801

Offline

Thanks, Dr. Gourash! Those web sites look interesting. We had a vibrating chew toy when Patrick was little that he seemed to like.

----- Original Message -----

From: Linda Gourash

To: pws-autism@yahoogroups.com

Cc: JaniceForsterMD@... ; 'Janalee Heinemann'

Sent: Friday, May 23, 2008 1:45 PM

Subject: RE: [pws-autism] teeth grinding

You might want to try chewy tubes:

http://www.affordabletherapysolutions.com/index.asp?pageaction=viewcats&category=5

They can meet the oral motor need without damaging teeth.

You may also wish to look at other oral motor stimulation with vibrating chew toys.

http://www.beyondplay.com/CATALOG/ORA1.HTM

Linda M. Gourash, MD

Pittsburgh Partnership

Specialists for Prader-Willi Syndrome

pws@pittsburghpartnership.com

Voice mail: 412 831-0355 x 534

From: pws-autism@yahoogroups.com [mailto:pws-autism@yahoogroups.com] On Behalf Of Terri & Howard Schlange
Sent: Saturday, May 17, 2008 10:23 PM
To: pws-autism@yahoogroups.com
Subject: Re: [pws-autism] teeth grinding

Hi Holly,

I'm Terri - Mom to Patrick, age 10. He has severe autism so he's completely non-verbal, cognitively age one and still in diapers. Patrick grinds his teeth also during the day when he's mad. We haven't done anything about this either b/c Patrick also wouldn't keep a mouth guard in. I'm not able to help you, but just wanted to let you know I'm out here in Kansas if you ever need anything!

Terri Schlange

----- Original Message -----

From: hollym2

To: pws-autism@yahoogroups.com

Sent: Tuesday, May 13, 2008 4:24 PM

Subject: [pws-autism] teeth grinding

Hi everyone - I am new to this site. I have a 15 year old daughter with
PWS and autism. She is grinding her teeth at such a great rate that her
dentist said by the time she is 30 she will have no teeth. So far he
has no way of preventing this as she functions at about a 2 year old
level and will not leave a mouth guard in. Wondering if anyone else has
enountered this problem. Holly

#103

From: "Linda Gourash" <Wfgourash@...>
Date: Fri May 23, 2008 6:45 pm
Subject: RE: teeth grinding

Wfgourash@...

http://www.affordabletherapysolutions.com/index.asp?pageaction=viewcats&category=5

You might want to try chewy tubes:

They can meet the oral motor need without damaging teeth.

You may also wish to look at other oral motor stimulation with vibrating chew toys.

http://www.beyondplay.com/CATALOG/ORA1.HTM

Linda M. Gourash, MD

Pittsburgh Partnership

Specialists for Prader-Willi Syndrome

pws@...

Voice mail: 412 831-0355 x 534

From: pws-autism@yahoogroups.com [mailto:pws-autism@yahoogroups.com] On Behalf Of Terri & Howard Schlange
Sent: Saturday, May 17, 2008 10:23 PM
To: pws-autism@yahoogroups.com
Subject: Re: [pws-autism] teeth grinding

Hi Holly,

I'm Terri - Mom to Patrick, age 10. He has severe autism so he's completely non-verbal, cognitively age one and still in diapers. Patrick grinds his teeth also during the day when he's mad. We haven't done anything about this either b/c Patrick also wouldn't keep a mouth guard in. I'm not able to help you, but just wanted to let you know I'm out here in Kansas if you ever need anything!

Terri Schlange

----- Original Message -----

From: hollym2

To: pws-autism@yahoogroups.com

Sent: Tuesday, May 13, 2008 4:24 PM

Subject: [pws-autism] teeth grinding

Hi everyone - I am new to this site. I have a 15 year old daughter with
PWS and autism. She is grinding her teeth at such a great rate that her
dentist said by the time she is 30 she will have no teeth. So far he
has no way of preventing this as she functions at about a 2 year old
level and will not leave a mouth guard in. Wondering if anyone else has
enountered this problem. Holly

#102

From: "Terri & Howard Schlange" <familyof4@...>
Date: Sun May 18, 2008 2:22 am
Subject: Re: teeth grinding

terri66801

Offline

Hi Holly,

Terri Schlange

----- Original Message -----

From: hollym2

To: pws-autism@yahoogroups.com

Sent: Tuesday, May 13, 2008 4:24 PM

Subject: [pws-autism] teeth grinding

Hi everyone - I am new to this site. I have a 15 year old daughter with
PWS and autism. She is grinding her teeth at such a great rate that her
dentist said by the time she is 30 she will have no teeth. So far he
has no way of preventing this as she functions at about a 2 year old
level and will not leave a mouth guard in. Wondering if anyone else has
enountered this problem. Holly

#101

From: "hollym2" <hrmc@...>
Date: Tue May 13, 2008 9:24 pm
Subject: teeth grinding

hollym2

Offline

Hi everyone - I am new to this site. I have a 15 year old daughter with
PWS and autism. She is grinding her teeth at such a great rate that her
dentist said by the time she is 30 she will have no teeth. So far he
has no way of preventing this as she functions at about a 2 year old
level and will not leave a mouth guard in. Wondering if anyone else has
enountered this problem. Holly

#100

From: Sandy <sandsinteriors@...>
Date: Tue Feb 26, 2008 9:02 pm
Subject: RE: SCD - Specific Carbohydrate Diet

sandsinterio...

Offline

Nothing more than what I was told was customary and ordinary because of PWS. He'd get diarrhea if he binged, so that's not something he would alert me to. We did have to buy a new toilet that was guaranteed to flush anything because of near daily plunging. No one would go in the bathroom after him. But he's a man, and he has PWS, so ... we just never thought about it ... or at least tried not to. He has a doc appt tomorrow, I can let you know if they find anything. Just give me a reminder off-list. Sandy

To: pws-autism@yahoogroups.com
From: jillaprilb@...
Date: Mon, 25 Feb 2008 18:30:08 -0800
Subject: RE: [pws-autism] SCD - Specific Carbohydrate Diet

Was David having diarrhea and other intestinal problems before this diet?

Sandy <sandsinteriors@hotmail.com> wrote:

We haven't really modified the diet for David as far as further restrictions or exchanges. He eats honey, butter, fruit juice--as per SCD, and he did not have those before. We haven't measured out quantities, he eats "normal" portions of everything, takes seconds at the dinner table if he wants. I have incorporated additional probiotics for Dave along with the yogurt, he was taking Omega3s, until I realized I'd bought the wrong one (flax seed instead of CLO), but plan to replace that, and I'm also considering enzymes to improve stomach function (PWS research, not SCD science). BUT ... old habits die hard. After so many years of portion control, calorie counting, etc., it's hard for me to give up on some of those things, which is why I have a constant supply of chicken or beef broth on hand which I encourage Dave to eat with each meal and also to eat that for between meal snacks. (I'm sure he'd prefer to eat the entire loaf of banana nut bread, but so would I.) He's still doing well, but he still has that PWS inability to resist temptation of other foods. We've had a couple instances where he's had access to "illegals", and taken it. Unfortunately, the foods caused pain as well as elongated bathroom visits, but I don't know that the PWS will ever allow him to "just say no." Sandy

To: pws-autism@yahoogroups.com
From: jillaprilb@sbcglobal.net
Date: Mon, 25 Feb 2008 12:28:20 -0800
Subject: Re: [pws-autism] SCD - Specific Carbohydrate Diet

Did you modify the diet for PWS? For example, are you using honey or not? Do you measure quantities of food for him?

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#99

From: Jill Boughton <jillaprilb@...>
Date: Tue Feb 26, 2008 2:30 am
Subject: RE: SCD - Specific Carbohydrate Diet

jillaprilb@...

Was David having diarrhea and other intestinal problems before this diet?

Sandy <sandsinteriors@...> wrote:

We haven't really modified the diet for David as far as further restrictions or exchanges. He eats honey, butter, fruit juice--as per SCD, and he did not have those before. We haven't measured out quantities, he eats "normal" portions of everything, takes seconds at the dinner table if he wants. I have incorporated additional probiotics for Dave along with the yogurt, he was taking Omega3s, until I realized I'd bought the wrong one (flax seed instead of CLO), but plan to replace that, and I'm also considering enzymes to improve stomach function (PWS research, not SCD science). BUT ... old habits die hard. After so many years of portion control, calorie counting, etc., it's hard for me to give up on some of those things, which is why I have a constant supply of chicken or beef broth on hand which I encourage Dave to eat with each meal and also to eat that for between meal snacks. (I'm sure he'd prefer to eat the entire loaf of banana nut bread, but so would I.) He's still doing well, but he still has that PWS inability to resist temptation of other foods. We've had a couple instances where he's had access to "illegals", and taken it. Unfortunately, the foods caused pain as well as elongated bathroom visits, but I don't know that the PWS will ever allow him to "just say no." Sandy

To: pws-autism@yahoogroups.com
From: jillaprilb@sbcglobal.net
Date: Mon, 25 Feb 2008 12:28:20 -0800
Subject: Re: [pws-autism] SCD - Specific Carbohydrate Diet

Did you modify the diet for PWS? For example, are you using honey or not? Do you measure quantities of food for him?

Visit Your Group

Yahoo! Health
Achy Joint?
Common arthritis
myths debunked.

Meditation and
Lovingkindness
A Yahoo! Group
to share and learn.

Sell Online
Start selling with
our award-winning
e-commerce tools.

.

Need to know the score, the latest news, or you need your Hotmail�-get your "fix". Check it out.

Reply | Forward | Messages in this Topic (7)

#98

From: Sandy <sandsinteriors@...>
Date: Mon Feb 25, 2008 11:44 pm
Subject: RE: SCD - Specific Carbohydrate Diet

sandsinterio...

Offline