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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?

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#98

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

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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@...
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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#97

From: Jill Boughton <jillaprilb@...>
Date: Mon Feb 25, 2008 8:28 pm
Subject: Re: SCD - Specific Carbohydrate Diet

jillaprilb@...

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

Sandy <sandsinteriors@...> wrote:

30 days ago, 6 of us began a new diet called the Specific Carbohydrate Diet or SCD. www.breakingtheviciouscycle.info We came across the diet while researching treatment methods for a friend's 4yo son dx w/ASD. I had SERIOUS reservations about this with David (23yo/pws) because of the initial phase being unlimited quantities of high-calorie foods. David agreed to keep a weight log and if he began to gain weight on the diet, then he would go back to "normal" (which, as you all know, is abnormal by most people's standards).

30 days and we've seen weight LOSS and an increase/progress in mental function and a decrease in his pws-food related behaviors such as sneaking, etc., despite access to foods that are not on the diet.

I really don't know what to say. David loves the diet (his words). I don't know if I'm ready to recommend it at this point. Has anyone else tried this diet?

Sandy (mom of Dave 23yo-pws/del)

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#96

From: Sandy <sandsinteriors@...>
Date: Fri Feb 15, 2008 9:26 pm
Subject: RE: SCD - Specific Carbohydrate Diet

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Hi Jill. I'll apologize in advance for the length of this reply, but here goes:

Unfortunately, when talking about how well David was doing, I should have knocked on wood. He got ahold of $100 and spent it--where else? he does have pws--on food. And very few things available in restaurants and convenience stores--perhaps none--are on this diet.

The silver lining, is that I am now sold on this diet. His splurge cost him a weight gain of all his loss, but, heartbreakingly, a regression in his mental achievements. It has been terrible the last couple of days to see him so fogged, but still remembering that he did have that ability to think clearly. Even with the setback, he showed the ability to still realize, perhaps for the first time in his life, what the stealing and lying does. In apology, he just looked at me and said, "Mom, I love you." Now, today (2nd day back on intro diet), he brought me a list of all that he bought and asked me to help him with what was "illegal" on the diet.

Anyway, what I believe is that David's gut is really injured. Just like most ASD kids' guts are. But like the gastro we saw a few weeks ago, most docs say it's like "which came first? the gut problems or the autism?" In essence, he says it's the fact that the child has autism that causes the weak muscle tone in the bowels, the diarrhea, etc. Not the other way around. There's a growing number of people in autism research that now believe that the gut problems of those with autism are what causes certain autistic behaviors.

Here's the critical part to PWS: those autistic behaviors they believe are associated with gut problems are the most common "autistic-like" behaviors that we see in our children with PWS: stimmy behaviors like hand flapping, rubbing, excitability attributed to yeast overgrowth, or aggressive behaviors like tantrums, self-injury or "spaciness" attributed to bad bacterial overgrowth.

This diet was developed with the principal that first you needed to remove the bad bacteria and yeast from the gut, allow time for the lining of the intestines to recognize that it didn't have to overproduce mucous as a defense, but which also impedes absorption of nutrients, and then slowly reintroduce easily digested foods so the newly exposed lining isn't harmed and also put the gut flora back into balance with good bacteria.

My own kid -- I know what he's eaten over the years. From garbage to the zero-calorie condiments that, seriously, this stuff just is plain inedible. To me, it makes sense that if he didn't have the stomach ache from being hungry all the time, he would be bent over in pain just from the stuff he eats.

There's another website which has more information on the diet itself. If anything I've said above is in contradiction to what you read there, assume I'm wrong, I'm still a newbie to all of this. There are people who have been on the diet for years to heal celiacs, and moms of kids with autism--used to have autism--that have been following the diet for close to 10 years.

www.pecanbread.com

Oh, Dave's diet before this was typical PWS fare: 1000-1200, lots of veggies, portion control, whole foods, "free" (low cal) fillers, and all the stuff that he sought out on his own and never told me about. He's at 190, 5'8", the most he's ever weighed thanks in part to new territory since he graduated from HS. He can usually lose weight with aggressive exercise plan and reduction of calories to about 700-800 per day. He's not on hGH, though when he was he maintained 160 with what seemed like twice as much food.

Sandy

To: pws-autism@yahoogroups.com
From: jillaprilb@...
Date: Fri, 15 Feb 2008 12:01:30 -0800
Subject: Re: [pws-autism] SCD - Specific Carbohydrate Diet

Sandy, this is fascinating. I'd like to know a bit more, e.g. how much does David weigh? What diet was he on before? We've had a lot of success with the Children's Institute's red-yellow-green diet, but April (almost 19)'s food-seeking behavior hs become much worse--she even ate playdough in her child development class yesterday! (Well, the teacher did say it was edible, e.g. non-toxic, so go figure!) Love to "sell" her on a diet. She's around 120# now, so 1000 calories is working well for her.

Jill

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#95

From: Jill Boughton <jillaprilb@...>
Date: Fri Feb 15, 2008 8:01 pm
Subject: Re: SCD - Specific Carbohydrate Diet

jillaprilb@...

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Sandy, this is fascinating. I'd like to know a bit more, e.g. how much does David weigh? What diet was he on before? We've had a lot of success with the Children's Institute's red-yellow-green diet, but April (almost 19)'s food-seeking behavior hs become much worse--she even ate playdough in her child development class yesterday! (Well, the teacher did say it was edible, e.g. non-toxic, so go figure!) Love to "sell" her on a diet. She's around 120# now, so 1000 calories is working well for her.

Jill

Sandy <sandsinteriors@...> wrote:

30 days ago, 6 of us began a new diet called the Specific Carbohydrate Diet or SCD. www.breakingtheviciouscycle.info We came across the diet while researching treatment methods for a friend's 4yo son dx w/ASD. I had SERIOUS reservations about this with David (23yo/pws) because of the initial phase being unlimited quantities of high-calorie foods. David agreed to keep a weight log and if he began to gain weight on the diet, then he would go back to "normal" (which, as you all know, is abnormal by most people's standards).

30 days and we've seen weight LOSS and an increase/progress in mental function and a decrease in his pws-food related behaviors such as sneaking, etc., despite access to foods that are not on the diet.

I really don't know what to say. David loves the diet (his words). I don't know if I'm ready to recommend it at this point. Has anyone else tried this diet?

Sandy (mom of Dave 23yo-pws/del)

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#94

From: Sandy <sandsinteriors@...>
Date: Mon Feb 11, 2008 4:04 pm
Subject: SCD - Specific Carbohydrate Diet

sandsinterio...

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30 days ago, 6 of us began a new diet called the Specific Carbohydrate Diet or SCD. www.breakingtheviciouscycle.info We came across the diet while researching treatment methods for a friend's 4yo son dx w/ASD. I had SERIOUS reservations about this with David (23yo/pws) because of the initial phase being unlimited quantities of high-calorie foods. David agreed to keep a weight log and if he began to gain weight on the diet, then he would go back to "normal" (which, as you all know, is abnormal by most people's standards).

30 days and we've seen weight LOSS and an increase/progress in mental function and a decrease in his pws-food related behaviors such as sneaking, etc., despite access to foods that are not on the diet.

I really don't know what to say. David loves the diet (his words). I don't know if I'm ready to recommend it at this point. Has anyone else tried this diet?

Sandy (mom of Dave 23yo-pws/del)

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#93

From: "CarolynLoker" <carolynloker@...>
Date: Wed Jan 23, 2008 10:14 pm
Subject: Autism conference

CarolynLoker

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Hi All,
I'm sending this to you in case you are military and have a dual
diagnosis of autism and PWS.  For those of you not in the military
you can find the conference information at
http://www.autismorlando.com/  You can also attend the conference
online for a fee.  Be well.  Carolyn Loker

Dear Military Families,

We wanted to let you know that FlagHouse, a global supplier of
physical education equipment and sensory products for special needs
children and adults is the proud supporter of a number of military
families who have children with autism who want to attend the Autism
Orlando Biennial Conference 2008.

FlagHouse has generously made available full conference scholarships
to the Autism Orlando Biennial Conference 2008 to selected military
families that have children with autism.

The conference features 22 of the world?s foremost autism experts
speaking on topics covering the full range of everything that you
must know about Autism Spectrum Disorders Across the Lifespan.

Adopting a lifespan perspective is a fundamental requirement for
developing a set of comprehensive services to individuals and
families who are dealing with Autism Spectrum Disorder.

This is what parents and professionals are saying:

?My life will not be the same. I went to the Autism Vancouver
Conference and it changed my life forever. I work as a therapist in
the field of autism and I learned so much and gained so many
resources and contacts that my job and life will never be the same. I
have gone from tears to jumping up and down so many times today.?

If you are a military family in need of this support, contact Autism
Today at 1-866-9AUTISM to receive your full conference scholarship.
Note there are a limited number of sponsorships available, so respond
quickly to this email.

Sincerely,

Karen Simmons
Founder, Autism Today

Autism Today founder, Karen Simmons, was in the United States Air
Force stationed in Panama City, Florida, while working as a Medical
Service Specialist caring for children with special needs. Ms.
Simmons can certainly relate to many of the issues facing special
needs families, as she too felt this impact during the time she
served as well as with her own child with autism.

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#92

From: rodise6@...
Date: Wed Jan 9, 2008 3:41 pm
Subject: Re: Re: PWS-PDD

reaganseely

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Sandy,

We have always used as much organic foods for Reagan as possible. When he was around a year old, we were giving him Fruit20 (a flavored water drink) that has splenda in it. We noticed a difference in behavior when he did not have the drink. Also, he came home from school one day just all wound up - turns out that he had yogurt for snack that day that had splenda. I began to see clearly that different foods effected his behavior. We have been "fine tuning" this diet over the last two years. It is a slow process as we are making the changes one at a time and then wait & see if there is a change in behavior. We don't have a Nutrionist, we are in the process of looking for one. But, we have journaled his caloric intake daily since he was born. Not to restrict calories, but just to know how much he eats in one day, and mostly to control portion size. (He hardly ever eats over 1036 cal a day). So, his "diet" is just one of choice/process of elimnation. By the way we also just started a new supplement called Coromega (we found it at Whole Foods) it was recommended by some of the newer moms on the 0-5 support group, and I have noticed a big change in his balance, speech and it seems to make his mind is sharper. We do limit the amount of bread/crackers that he gets. I found a bread that has no fructose corn syrup, the downside is that is higher in calories than lite wheat bread (Kroger brand) so we give him just one slice for a p, b & j. We also measure of the pb & j. One Tbsp of each, which is alomst too much for just one slice of bread... still "fine tuning". Almost all crackers/gr. crackers have High Fructose Corn Syrup - so we buy him apple cinnamon rice cakes. No sugar jelly, organic pb, no sugar applesauce, etc. Hope this info hepls.

Diane Seely

-----Original Message-----
From: sandsinteriors2002 <sandsinteriors@...>
To: pws-autism@yahoogroups.com
Sent: Tue, 8 Jan 2008 7:10 pm
Subject: [pws-autism] Re: PWS-PDD

Hi Diane - How old is Reagan? Mine is 23yo--he'd love you for a
parent; I'm the absolute worst when it comes to sticking to a plan and
I drive my son nuts. I've just turned my appt calendar over to him
these days and he deals with it. When he has no control, he doesn't
have meltdowns, but he will go to sleep.

I have a question for you about your diet routine. My friend's son has
autism (my son autistic-like symptoms) and we're all going to start a
wonderful diet in 3 days called SDC "Specific Carbohydrate Diet."
Sounds a lot like what you've done. Do you mind telling me more about
your experience?

Sandy

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

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#91

From: "sandsinteriors2002" <sandsinteriors@...>
Date: Wed Jan 9, 2008 12:10 am
Subject: Re: PWS-PDD

sandsinterio...

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Hi Diane - How old is Reagan?  Mine is 23yo--he'd love you for a
parent; I'm the absolute worst when it comes to sticking to a plan and
I drive my son nuts.  I've just turned my appt calendar over to him
these days and he deals with it.  When he has no control, he doesn't
have meltdowns, but he will go to sleep.

I have a question for you about your diet routine.  My friend's son has
autism (my son autistic-like symptoms) and we're all going to start a
wonderful diet in 3 days called SDC "Specific Carbohydrate Diet."
Sounds a lot like what you've done.  Do you mind telling me more about
your experience?

Sandy

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

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#90

From: rodise6@...
Date: Tue Jan 8, 2008 2:22 pm
Subject: Re: PWS-PDD

reaganseely

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Terri,

Thank you for responding. Over the past year we have noticed a behavior pattern with Reagan that really concerns us. It seems as he cannot express his frustrations/emotions in a way that will be effective and get him back in "thinking mode" rather than just being focused on what his immediate frustration/disappointment/emotion is. He needs contant reinforcement on what is going to happen each day. We are by nature very structured, and with the birth of Reagan and the diagnosis of PWS and the need for routine -- we are even more so now. We are diligent in routine /structure in terms of eating tiimes, food, bedtime,etc. If by some chance the schedule needs to be changed and I am not able to give him a heads up about it, we are going to have a meltdown. If he is told that he will be able to do a particular activity (we use the "first and then" method) and he is not abe to do that activity exactly as promised he gets very upset and cries, and just cannot get past it. If he is angry he makes a breathy sound and flaps his hands, sometimes he says "Oh, Oh, Oh, but no real words to describe what is wrong. He gets angry over every little thing that is out of place to him. These episodes are short lived at the moment, but as he gets older and stronger I fear that it will get worse. Reagan is very verbal, has great communication skills as far as taking turns and using a give and take dialog with someone. He has greatly improved in making eye contact and sustaining eye contact. I think that this has been attributed to a change in diet - using organic foods and removing artificial sugars such as splenda and the like, high fructose corn syrup, and recently wheat and gluten. However, he lacks in social (peer) skills and coping skills. He is never agressive, or mean in any way. Actually the opposite, he gets his feelings hurt and is sad. He gets these big crocodile tears in his eyes, and no sound. No crying, no tears. I worry about him holding back the tears, and not verbally expressing himself. I say to him...Take a deep breath, blow it out..use your words and talk to me. Sometimes it works, but mostly it's a guessing game for me. Reagan has only been slightly behind in hitting his milestones. We are thankful for all that he has accomplished. He is still very behind in OT and PT. He has hand tremors when trying to do a fine motor task. Academically he is doing great. He is bright, funny and has a great sense of humor, loves to play and pretend. We are just starting to see a Behaviorlist. Our first meeting was last night. She said some very positive, wonderful things about Reagan. I have struggled for the past year with questioning if he is autistic or not, and how to best go about helping him. She answered my question - she said he is very social, he is not autistic, but he does have some things that coincide with PDD, and we will concentrate on those things. I am praying that this therapy will bring answers to many other questions for us as well.

Diane Seely

-----Original Message-----
From: Terri & Howard Schlange <familyof4@...>
To: pws-autism@yahoogroups.com
Sent: Mon, 7 Jan 2008 9:58 pm
Subject: Re: [pws-autism] PWS-PDD

Diane,

My son Patrick, age 9, is UPD PWS with autism. What types of things does Reagan display? Does he talk? Patrick is completely non-verbal & still in diapers. He did say some words, but lost them all by age 2.

Terri

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

From: reaganseely

To: pws-autism@yahoogroups.com

Sent: Monday, January 07, 2008 9:43 AM

Subject: [pws-autism] PWS-PDD

Hello,

My name is Diane Seely. My four year old son Reagan has PWS/UPD, and
shows some characteristics of PDD. We would like to join this group.

Thank You,
The Seelys

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#89

From: "Terri & Howard Schlange" <familyof4@...>
Date: Tue Jan 8, 2008 2:58 am
Subject: Re: PWS-PDD

terri66801

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Diane,

Terri

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

From: reaganseely

To: pws-autism@yahoogroups.com

Sent: Monday, January 07, 2008 9:43 AM

Subject: [pws-autism] PWS-PDD

Hello,

My name is Diane Seely. My four year old son Reagan has PWS/UPD, and
shows some characteristics of PDD. We would like to join this group.

Thank You,
The Seelys

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#88

From: "reaganseely" <rodise6@...>
Date: Mon Jan 7, 2008 3:43 pm
Subject: PWS-PDD

reaganseely

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Hello,

My name is Diane Seely.  My four year old son Reagan has PWS/UPD, and
shows some characteristics of PDD.  We would like to join this group.

Thank You,
The Seelys

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#87

From: reneebro@...
Date: Fri Sep 21, 2007 2:01 am
Subject: Re: Contrasts between PWS and Autism

aimsbestprices

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Yes, Jacob doesn't react well to touch unless he initiates it and only watches tv (tivo) in fast forward or rewind.

-------------- Original message --------------
From: sarah <spoiledsarah25@...>

What about not liking to be touched in anyway unless you tell them what your going to do and even that don't work. And what about listening to TV all the way turned up and fast forwarding through songs turned all the way up. What about not understanding sarcasm, humor, and irony? Repeating them selfs over and over?

reneebro@comcast.net wrote:

I will also add the fact that Jacob (age 10) does a lot of stimming behaviors (sitting and twirling toy cars, photos, cards, etc.) and rocking that I dont see in the other kids who have only PWS.

-------------- Original message --------------
From: Lisa Ranieri <nyclee418@yahoo.com>

if I may, I have a friend who has 3 children two of which have autism. She has to lock up her kitchen just as we do to prevent her 2 children from getting any unwanted calories. Also her daughter will eat out of the freezer as I had read early on that can happen in people with PWS. Both are food seekers and hone into any food item. Her son is verbal but her daughter is nonverbal. There are many similarities I see between the two diagnosises but definitely the most pronounced contrast is sociability.

Sincerely,

Lisa Mom to Luke 5

Paul & Robin Barrett <paulbarrett@gci.net> wrote:

My son will be 7 next month. He lost all eye contact and interest in people and toys around age 15 months.He behaved as though he were deaf and blind. He is a little better now, although he still cannot talk at all. He was a different child before he regressed into autism. He would interact with people and would have great eye contact. He would actually flirt with people. I believe that most kids with PWS are social and can talk. I think that is the main difference.

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

From: lecielviolet79

To: pws-autism@yahoogroups.com

Sent: Wednesday, September 19, 2007 3:38 PM

Subject: [pws-autism] Contrasts between PWS and Autism

Hello,

My son is 7 and was diagnosed with autism at age 2.5 and then PWS at
age 5. The signs/symptoms of both are very similar and the distinction
between the two is quite blurred for me. How do these two diagnoses
contrast?

I must note that I am very comforted to have found this group. : )

Jessica
Phoenix, AZ

__________ NOD32 2540 (20070919) Information __________

This message was checked by NOD32 antivirus system.
http://www.eset.com

Sincerely,

Lisa Ranieri

Mom to Luke 4y 3 mo 'Baby' (William) 27 mo, and a Mallory Lynn born May 24, 2006 (6lbs, 2oz 18inches)

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#86

From: sarah <spoiledsarah25@...>
Date: Fri Sep 21, 2007 12:01 am
Subject: Re: Contrasts between PWS and Autism

spoiledsarah25

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What about not liking to be touched in anyway unless you tell them what your going to do and even that don't work. And what about listening to TV all the way turned up and fast forwarding through songs turned all the way up. What about not understanding sarcasm, humor, and irony? Repeating them selfs over and over?

reneebro@... wrote:

I will also add the fact that Jacob (age 10) does a lot of stimming behaviors (sitting and twirling toy cars, photos, cards, etc.) and rocking that I dont see in the other kids who have only PWS.

-------------- Original message --------------
From: Lisa Ranieri <nyclee418@yahoo.com>

if I may, I have a friend who has 3 children two of which have autism. She has to lock up her kitchen just as we do to prevent her 2 children from getting any unwanted calories. Also her daughter will eat out of the freezer as I had read early on that can happen in people with PWS. Both are food seekers and hone into any food item. Her son is verbal but her daughter is nonverbal. There are many similarities I see between the two diagnosises but definitely the most pronounced contrast is sociability.

Sincerely,

Lisa Mom to Luke 5

Paul & Robin Barrett <paulbarrett@gci.net> wrote:

My son will be 7 next month. He lost all eye contact and interest in people and toys around age 15 months.He behaved as though he were deaf and blind. He is a little better now, although he still cannot talk at all. He was a different child before he regressed into autism. He would interact with people and would have great eye contact. He would actually flirt with people. I believe that most kids with PWS are social and can talk. I think that is the main difference.

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

From: lecielviolet79

To: pws-autism@yahoogroups.com

Sent: Wednesday, September 19, 2007 3:38 PM

Subject: [pws-autism] Contrasts between PWS and Autism

Hello,

My son is 7 and was diagnosed with autism at age 2.5 and then PWS at
age 5. The signs/symptoms of both are very similar and the distinction
between the two is quite blurred for me. How do these two diagnoses
contrast?

I must note that I am very comforted to have found this group. : )

Jessica
Phoenix, AZ

__________ NOD32 2540 (20070919) Information __________

This message was checked by NOD32 antivirus system.
http://www.eset.com

Sincerely,

Lisa Ranieri

Mom to Luke 4y 3 mo 'Baby' (William) 27 mo, and a Mallory Lynn born May 24, 2006 (6lbs, 2oz 18inches)

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#85

From: reneebro@...
Date: Thu Sep 20, 2007 4:19 pm
Subject: Re: Contrasts between PWS and Autism

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I will also add the fact that Jacob (age 10) does a lot of stimming behaviors (sitting and twirling toy cars, photos, cards, etc.) and rocking that I dont see in the other kids who have only PWS.

-------------- Original message --------------
From: Lisa Ranieri <nyclee418@...>

if I may, I have a friend who has 3 children two of which have autism. She has to lock up her kitchen just as we do to prevent her 2 children from getting any unwanted calories. Also her daughter will eat out of the freezer as I had read early on that can happen in people with PWS. Both are food seekers and hone into any food item. Her son is verbal but her daughter is nonverbal. There are many similarities I see between the two diagnosises but definitely the most pronounced contrast is sociability.

Sincerely,

Lisa Mom to Luke 5

Paul & Robin Barrett <paulbarrett@gci.net> wrote:

My son will be 7 next month. He lost all eye contact and interest in people and toys around age 15 months.He behaved as though he were deaf and blind. He is a little better now, although he still cannot talk at all. He was a different child before he regressed into autism. He would interact with people and would have great eye contact. He would actually flirt with people. I believe that most kids with PWS are social and can talk. I think that is the main difference.

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

From: lecielviolet79

To: pws-autism@yahoogroups.com

Sent: Wednesday, September 19, 2007 3:38 PM

Subject: [pws-autism] Contrasts between PWS and Autism

Hello,

My son is 7 and was diagnosed with autism at age 2.5 and then PWS at
age 5. The signs/symptoms of both are very similar and the distinction
between the two is quite blurred for me. How do these two diagnoses
contrast?

I must note that I am very comforted to have found this group. : )

Jessica
Phoenix, AZ

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Sincerely,

Lisa Ranieri

Mom to Luke 4y 3 mo 'Baby' (William) 27 mo, and a Mallory Lynn born May 24, 2006 (6lbs, 2oz 18inches)

Building a website is a piece of cake.
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#84

From: Lisa Ranieri <nyclee418@...>
Date: Thu Sep 20, 2007 2:30 am
Subject: Re: Contrasts between PWS and Autism

nyclee418

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if I may, I have a friend who has 3 children two of which have autism. She has to lock up her kitchen just as we do to prevent her 2 children from getting any unwanted calories. Also her daughter will eat out of the freezer as I had read early on that can happen in people with PWS. Both are food seekers and hone into any food item. Her son is verbal but her daughter is nonverbal. There are many similarities I see between the two diagnosises but definitely the most pronounced contrast is sociability.

Sincerely,

Lisa Mom to Luke 5

Paul & Robin Barrett <paulbarrett@...> wrote:

My son will be 7 next month. He lost all eye contact and interest in people and toys around age 15 months.He behaved as though he were deaf and blind. He is a little better now, although he still cannot talk at all. He was a different child before he regressed into autism. He would interact with people and would have great eye contact. He would actually flirt with people. I believe that most kids with PWS are social and can talk. I think that is the main difference.

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

From: lecielviolet79

To: pws-autism@yahoogroups.com

Sent: Wednesday, September 19, 2007 3:38 PM

Subject: [pws-autism] Contrasts between PWS and Autism

Hello,

My son is 7 and was diagnosed with autism at age 2.5 and then PWS at
age 5. The signs/symptoms of both are very similar and the distinction
between the two is quite blurred for me. How do these two diagnoses
contrast?

I must note that I am very comforted to have found this group. : )

Jessica
Phoenix, AZ

__________ NOD32 2540 (20070919) Information __________

This message was checked by NOD32 antivirus system.
http://www.eset.com

Sincerely,

Lisa Ranieri

Mom to Luke 4y 3 mo 'Baby' (William) 27 mo, and a Mallory Lynn born May 24, 2006 (6lbs, 2oz 18inches)

Building a website is a piece of cake.
Yahoo! Small Business gives you all the tools to get online.

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#83

From: Paul & Robin Barrett <paulbarrett@...>
Date: Thu Sep 20, 2007 12:45 am
Subject: Re: Contrasts between PWS and Autism

paulbarrett@...

Send Email

My son will be 7 next month. He lost all eye contact and interest in people and toys around age 15 months.He behaved as though he were deaf and blind. He is a little better now, although he still cannot talk at all. He was a different child before he regressed into autism. He would interact with people and would have great eye contact. He would actually flirt with people. I believe that most kids with PWS are social and can talk. I think that is the main difference.

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

From: lecielviolet79

To: pws-autism@yahoogroups.com

Sent: Wednesday, September 19, 2007 3:38 PM

Subject: [pws-autism] Contrasts between PWS and Autism

Hello,

My son is 7 and was diagnosed with autism at age 2.5 and then PWS at
age 5. The signs/symptoms of both are very similar and the distinction
between the two is quite blurred for me. How do these two diagnoses
contrast?

I must note that I am very comforted to have found this group. : )

Jessica
Phoenix, AZ

__________ NOD32 2540 (20070919) Information __________

This message was checked by NOD32 antivirus system.
http://www.eset.com

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#82

From: "lecielviolet79" <lecielviolet79@...>
Date: Wed Sep 19, 2007 11:38 pm
Subject: Contrasts between PWS and Autism

lecielviolet79

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Send Email

Hello,

My son is 7 and was diagnosed with autism at age 2.5 and then PWS at
age 5.  The signs/symptoms of both are very similar and the distinction
between the two is quite blurred for me.  How do these two diagnoses
contrast?


I must note that I am very comforted to have found this group. : )


Jessica
Phoenix, AZ

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#81

From: "Ivy Boyle" <drsboyle@...>
Date: Mon Sep 10, 2007 2:59 pm
Subject: FW: PWCF General Education Meeting

boyle_ivy

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From: TLCGRAZ@... [mailto:TLCGRAZ@...]
Sent: Monday, September 10, 2007 9:53 AM
To: drsboyle@...
Subject: PWCF General Education Meeting

Good morning. Can you please post this meeting announcement to your eSupport Group? Your help is greatly appreciated! xoxo, Lisa Graziano

Dear Families: I write on behalf of Prader-Willi California Foundation to invite you to attend our annual 2007 General Education Meeting. The Foundation's conferences are always spectacular and very highly rated. This year's meeting will be held at the beautiful Westin Los Angeles Airport Hotel. Flying into Los Angeles International Airport (LAX), the hotel is a short free hotel shuttle ride away. Hurry to book your hotel reservation before September 26 to receive the reduced PWCF rate.

A brief summary of the program is shown below and the link to a more detailed description of the program as well as the online registration form is http://www.pwcf.org/pages/emae.htm

For those of you who wish to learn more about managing the medical aspects of the syndrome, managing the behavioral aspects of the syndrome, and the progress of PWS research, this is the conference for you! We sure hope to see you there! Warmest regards, Lisa Graziano, PWCF Executive Director

Prader-Willi Syndrome:

Targeting

Successful�

Medical &

Behavioral

Interventions

Saturday, October 27, 2007

8:00 a.m. — 5:00 p.m.

The Westin Los Angeles Airport Hotel

5400 West Century Boulevard

Los Angeles, California� 90045

310.216.5858

Think you know all there is to know about Prader-Willi syndrome?� Think again!� Research continues to broaden our understanding and provide us with better insights into the complexities of this disorder. This conference will provide parents, care providers and professionals with state-of-the-art information and strategies to help manage the medical as well as the behavioral aspects of�� Prader-Willi syndrome.��

Medical Aspects of Prader-Willi Syndrome — Daniel Driscoll, M.D., Ph.D.

Behavioral Aspects of Prader-Willi Syndrome — Mary K Ziccardi

Research: What’s New & What Does it Mean to ME? — Janalee Heinemann, M.S.

Today, Tomorrow and Beyond: The State of� Prader-Willi Syndrome Association — Craig Polhemus

PWCF Business Meeting

Youth & Adult Program — Programs organized by age group will provide a fun-filled day for persons with PWS and their siblings.�

Workshop Sessions — Three Workshops will Focus on the Infant & Young Child; Focus on Behavior / School Age Child; or Focus on the Adult.�

Sharing Sessions — Sharing Sessions will provide the opportunity to network and connect with other attendees.��

What’s Up Doc? Fundraiser Dinner — PWCF members who donate $150 or more may dine with our speakers!� Dinner will follow the meeting from 6:00—7:30 p.m. in the� Westin Hotel’s Charisma Caf�.� Your donation is tax-deductible to the extent permitted by law.� Space is limited so book your seat today! [Please note that this event is available to PWCF members first, non-members if space allws]

Hotel Information — Reserve your room with The Westin Los Angeles Airport Hotel (310.216.5858) by September 26 to receive the PWCF reduced rate of $125 plus taxes.� Self-Parking is $15/day.� The Westin Los Angeles Hotel is located just four blocks from the Los Angeles International Airport.� A complimentary Hotel shuttle runs to and from LAX every twenty minutes.� Extend your stay and experience the exciting things to do in and around Los Angeles!�

Registration Information — Register by mail or online at www.PWCF.org.� General Conference Fee:� PWCF members $20/person.� Non-PWCF members $30/person.�� Youth & Adult Program Fee:� PWCF members $10/child (maximum fee $20).� Non-PWCF members $12/child.�� All fees for PWCF members may be reduced or waived upon request. Pre-Registration deadline is October 17.� If registering after October 17 call PWCF to check space availability.

Questions? For more detailed information about the conference or to receive a brochure call the PWCF office at 310.372.5053 or 800.400.9994 toll-free within California.�� Or visit our website at www.PWCF.org.�

See you at the Meeting!

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#80

From: "Barbara McManus" <barmcm@...>
Date: Sat Sep 1, 2007 5:00 pm
Subject: Autism Symptoms

bmcmanusmceer

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Hi all!

This week the PWSA (USA) office is sending out the attached survey to people who had responded Yes to Autism and PWS. The office was going to mail them this past week, but I'm not sure if they went in the mail yet. If you have not filled in the original survey, you will not be getting this in the mail.

Your ID number is the number that is assigned when you did the first survey online.

I read questions about Autism and PWS on this list. From the survey entries so far, UPD and Deletion are equally prone to Autism. This new survey will help answer even more question.

If you have questions about the surveys, please email me directly at webmaster1@...

Thanks

Barbara McManus

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#79

From: millymar@...
Date: Sat Sep 1, 2007 3:07 pm
Subject: Re: Autism Symptoms

millymarr

Offline

Send Email

Is you son UPD? My daughter is UPD and I was reading that Autism is
seen in 25.3% of children with PWS and that UPD at greater risk for
autism.
If you have a free time, pls give me a call (954)822-6759. I would like
to ask you how kids with PWS/Autism do different than Kids with PWS
only.

Thanks,

Milly


-----Original Message-----
From: Paul & Robin Barrett <paulbarrett@...>
To: pws-autism@yahoogroups.com
Sent: Fri, 31 Aug 2007 6:03 pm
Subject: Re: [pws-autism] Autism Symptoms


























My son would look up alot,too. At his worst, he
almost acted as if he were deaf and blind, although he was not. He
would not
recognise me at age 15 months until I was right in front of him,
calling his
name.

   ----- Original Message -----
   From:
   millymarr
   To: pws-autism@yahoogroups.com
   Sent: Thursday, August 30, 2007 1:50
   PM
   Subject: [pws-autism] Autism
   Symptoms



   Hello:

My name is Milly and my daugther is 7 1/2 months (PWS/UPD).
   She is a 32 week premature
baby. She is not in GH yet. I am a little
   concerned because she does not have eye contact,
she is not interested in
   her surroundings and she is always looking at something behind her

head(always looking upwards).She does not smile or recognize me yet.
She
   is already rolling
over, kicking and making sounds, etc.

Please let
   me know if you think may be autism.

Thanks so
   much,

Milly



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   Information __________

This message was checked by NOD32 antivirus
   system.
http://www.eset.com


























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Email and AIM finally together. You've gotta check out free AOL Mail! -
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#78

From: Paul & Robin Barrett <paulbarrett@...>
Date: Fri Aug 31, 2007 10:03 pm
Subject: Re: Autism Symptoms

paulbarrett@...

Send Email

My son would look up alot,too. At his worst, he almost acted as if he were deaf and blind, although he was not. He would not recognise me at age 15 months until I was right in front of him, calling his name.

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

From: millymarr

To: pws-autism@yahoogroups.com

Sent: Thursday, August 30, 2007 1:50 PM

Subject: [pws-autism] Autism Symptoms

Hello:

My name is Milly and my daugther is 7 1/2 months (PWS/UPD). She is a 32 week premature
baby. She is not in GH yet. I am a little concerned because she does not have eye contact,
she is not interested in her surroundings and she is always looking at something behind her
head(always looking upwards).She does not smile or recognize me yet. She is already rolling
over, kicking and making sounds, etc.

Please let me know if you think may be autism.

Thanks so much,

Milly

__________ NOD32 2493 (20070831) Information __________

This message was checked by NOD32 antivirus system.
http://www.eset.com

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#77

From: Paul & Robin Barrett <paulbarrett@...>
Date: Fri Aug 31, 2007 10:07 pm
Subject: Re: Autism Symptoms

paulbarrett@...

Send Email

One other thing, although I know Oliver regressed into autism, we didn't seek a diagnosis of it, because there may have been negative insurance ramifications. You see, they will pay for therapy etc for PWS, but will often refuse to pay for autism, which they claim is a pschiatric illness.But all that being said, the only medical person who has helped our son with his autistic tendencies was a naturopath.

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

From: millymarr

To: pws-autism@yahoogroups.com

Sent: Thursday, August 30, 2007 1:50 PM

Subject: [pws-autism] Autism Symptoms

Hello:

My name is Milly and my daugther is 7 1/2 months (PWS/UPD). She is a 32 week premature
baby. She is not in GH yet. I am a little concerned because she does not have eye contact,
she is not interested in her surroundings and she is always looking at something behind her
head(always looking upwards).She does not smile or recognize me yet. She is already rolling
over, kicking and making sounds, etc.

Please let me know if you think may be autism.

Thanks so much,

Milly

__________ NOD32 2493 (20070831) Information __________

This message was checked by NOD32 antivirus system.
http://www.eset.com

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#76

From: Paul & Robin Barrett <paulbarrett@...>
Date: Fri Aug 31, 2007 9:57 pm
Subject: Re: Autism Symptoms

paulbarrett@...

Send Email

I would be concerned about the lack of eye contact. My son had good eye contact as a very small baby, but then lost it between the 13th and 17th months. He is almost 7 now and still doesn't have normal eye contact, but is much better than he was.

Certainly you should start posing questions to your pediatrician. And perhaps start looking for a developmental specialist.

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

From: millymarr

To: pws-autism@yahoogroups.com

Sent: Thursday, August 30, 2007 1:50 PM

Subject: [pws-autism] Autism Symptoms

Hello:

My name is Milly and my daugther is 7 1/2 months (PWS/UPD). She is a 32 week premature
baby. She is not in GH yet. I am a little concerned because she does not have eye contact,
she is not interested in her surroundings and she is always looking at something behind her
head(always looking upwards).She does not smile or recognize me yet. She is already rolling
over, kicking and making sounds, etc.

Please let me know if you think may be autism.

Thanks so much,

Milly

__________ NOD32 2493 (20070831) Information __________

This message was checked by NOD32 antivirus system.
http://www.eset.com

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#75

From: "millymarr" <millymar@...>
Date: Thu Aug 30, 2007 9:50 pm
Subject: Autism Symptoms

millymarr

Offline

Send Email

Hello:

My name is Milly and my daugther is 7 1/2 months (PWS/UPD). She is a 32 week
premature
baby. She is not in GH yet.   I am a little concerned because she does not have
eye contact,
she is not interested in her surroundings and she is always looking at something
behind her
head(always looking upwards).She does not smile or recognize me yet. She is
already rolling
over, kicking and making sounds, etc.

Please let me know if you think may be autism.

Thanks so much,

Milly

Reply | Forward | Messages in this Topic (6)

#74

From: "Linda Gourash" <Wfgourash@...>
Date: Tue Aug 21, 2007 3:33 am
Subject: RE: PWS and autism spectrum disorders

Wfgourash@...

Send Email

Jennifer, Thank you for the feedback. If you bring Nolan to a National conference please let me know ahead of time; I would like to try to meet him in the YIP/YAP program.

Linda M. Gourash, MD

Pittsburgh Partnership

Specialists for Prader-Willi Syndrome

ConsultforPWS@...

From: pws-autism@yahoogroups.com [mailto:pws-autism@yahoogroups.com] On Behalf Of Jennifer
Sent: Monday, August 20, 2007 9:20 AM
To: pws-autism@yahoogroups.com
Subject: [pws-autism] PWS and autism spectrum disorders

Dr. Gourash,
Thank you for taking the time to view the posts on this list. I have
heard you speak at the National conferences and still refer to my
notes from those sessions, which are a wealth of information.

I am happy to hear that PWSA and the CAB are looking at the dual Dx
issue with autism and PWS. My son Nolan (age 4) recently was Dx with
PDD-NOS. He is quite verbal and makes eye contact, so the classic
autism Dx did not fit, but some of his other problems and behaviors
did not seem to fit the PWS profile either. I never understood why
other families on the message boards with children the same age as
Nolan didn't seem to be having the same problems we are having, and
the dual Dx explains some of that. Fortunately, Nolan's psychiatrist
has a good amount of experience with PWS so understands both sides of
what's going on with him.

I look forward to hearing more on this topic.

Jennifer K.
Cedarburg, WI

--- In pws-autism@yahoogroups.com, "Linda Gourash" <Wfgourash@...>
wrote:
>
> I have been reading the posts from this group and I very much agree
with
> Ivy. The PWSA is more than committed to serving the children with
autism and
> PWS. This last CAB meeting (Clinical Advisory Board) in Dallas on
July 31,
> we set aside an hour to discuss Autism and PWS. These posts are
also very
> helpful in allowing us to begin to identify ways in which the PWSA
and can
> better serve this group of children and their families. And yes,
any good
> study proposal to look at this subset of children will be given high
> priority.
>
>
>
> Linda Gourash
>
> PWSA CAB and Executive Board of Directors

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#73

From: "Jennifer" <moonandstars4@...>
Date: Mon Aug 20, 2007 1:19 pm
Subject: PWS and autism spectrum disorders

plantgirl1414

Offline

Send Email

Dr. Gourash,
Thank you for taking the time to view the posts on this list.  I have
heard you speak at the National conferences and still refer to my
notes from those sessions, which are a wealth of information.

I am happy to hear that PWSA and the CAB are looking at the dual Dx
issue with autism and PWS.  My son Nolan (age 4) recently was Dx with
PDD-NOS.  He is quite verbal and makes eye contact, so the classic
autism Dx did not fit, but some of his other problems and behaviors
did not seem to fit the PWS profile either. I never understood why
other families on the message boards with children the same age as
Nolan didn't seem to be having the same problems we are having, and
the dual Dx explains some of that.  Fortunately, Nolan's psychiatrist
has a good amount of experience with PWS so understands both sides of
what's going on with him.

I look forward to hearing more on this topic.

Jennifer K.
Cedarburg, WI

--- In pws-autism@yahoogroups.com, "Linda Gourash" <Wfgourash@...>
wrote:
>
> I have been reading the posts from this group and I very much agree
with
> Ivy. The PWSA is more than committed to serving the children with
autism and
> PWS. This last CAB meeting (Clinical Advisory Board) in Dallas on
July 31,
> we set aside an hour to discuss Autism and PWS. These posts are
also very
> helpful in allowing us to begin to identify ways in which the PWSA
and can
> better serve this group of children and their families.  And yes,
any good
> study proposal to look at this subset of children will be given high
> priority.
>
>
>
> Linda Gourash
>
> PWSA CAB and Executive Board of Directors

Reply | Forward | Messages in this Topic (7)

#72

From: "Linda Gourash" <Wfgourash@...>
Date: Mon Aug 20, 2007 1:10 am
Subject: RE: Re: Renee

Wfgourash@...

Send Email

I have been reading the posts from this group and I very much agree with Ivy. The PWSA is more than committed to serving the children with autism and PWS. This last CAB meeting (Clinical Advisory Board) in Dallas on July 31, we set aside an hour to discuss Autism and PWS. These posts are also very helpful in allowing us to begin to identify ways in which the PWSA and can better serve this group of children and their families.� And yes, any good study proposal to look at this subset of children will be given high priority.

Linda Gourash

PWSA CAB and Executive Board of Directors

From: pws-autism@yahoogroups.com [mailto:pws-autism@yahoogroups.com] On Behalf Of boyle_ivy
Sent: Saturday, August 18, 2007 4:25 PM
To: pws-autism@yahoogroups.com
Subject: [pws-autism] Re: Renee

--- In pws-autism@yahoogroups.com, "Terri & Howard Schlange"
<familyof4@...> wrote:
>
> Renee,
>
> I was hoping you were closer! It would be nice to have a dual
diagnosis child near us. Our children are about the same age. I
don't go to the PWSA Conferences anymore because I don't feel like I
fit in that well with all the other problems of autism.
>
> Terri
> Mom to Patrick, 9 with PWS, and Eric, age 12
>
Terri,
I hope you don't mind if I forward this last post to the national
office and the clinical board, for emphasis. I have been telling
them that there is an entire group out there with dual diagnosis
kids, and that they are not coming to the meetings because their kids
look so different from the others. You stated it perfectly, and I'm
sure many people feel the way you do.
In fact, that is why PWSAUSA started this group, and is becoming
quite interested now in our dual diagnosis kids. Some studies will
be beginning soon, to look at our group.

Ivy
Mother of Alex, age 20, with PWS and autism, and group moderator.

Reply | Forward | Messages in this Topic (7)

#71

From: "Terri & Howard Schlange" <familyof4@...>
Date: Mon Aug 20, 2007 12:38 am
Subject: Barb McManus

terri66801

Offline

Send Email

Thanks, Barb, for all you do!

Terri Schlange

Mother of Patrick, age 9 with PWS, and Eric, age 12

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#70

From: "Barbara McManus" <barmcm@...>
Date: Sun Aug 19, 2007 7:58 pm
Subject: Re: Renee

bmcmanusmceer

Offline

Send Email

Hi everyone,
I have been reading the messages on this list with interest.  It seems
many have mentioned Autism on the national survey.  In fact, it was 13%
of those who responded to the survey checked off Autism.  Janalee and I
will be working on survey number 2 within the next week.  I hope to
include some specific questions on autistic behavior in that survey.

If you have not participated in the 1st survey, please do so.
www.pwsausa.org/population

Thank you.

Barbara McManus

Reply | Forward | Messages in this Topic (7)

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