Re: what does autism look like in people who have DS?

[Guest guest]

I have never seen anybody else like this. Wait, i have a friend that has

mosaicism and she slightly changes. She has a lesser percentage than my son. I

am not around her all the time to notice whether or not she portrays both

phenotypes or not.

It drove me almost insane at first because I did not understand what I was

seeing. I even would not eat leftovers...lol...I thought someone might be

drugging my food. Then I realized no one was because I watched everything I ate

and bought it in packages. once the packages were opened, I would throw out

anything leftover. It really got to me, then I realized that is what it must be.

(His two cell lines.) Strange but true.

> > > >

> > > >

> > > > Go to medical series on the left, then click on Autism and PDD

> > > > http://www.riverbendds.org/index.htm

> > > > Read especially Capone and Joan Medlen's article from Disability

Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy Krieger

is someone who has researched the dual dx....not too much info out there

actually.

> > > >

> > > > You can pretty much go by the criteria for Autism itself allowing for a

bit more demonstration of affection and sometimes more imitative play. This

wasn't true for us but the diagnosis is handed out a bit more freely these days.

> > > >

> > > >

> > > > More saved info:

> > > >

> > > > http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

> > > >

> > > > " Down Syndrome and Autism Internet Information Center

> > > >

> > > > A child with Down syndrome is born in 1 out of every 800 births. An

> > > > estimated 7-10% of those children will be diagnosed as also having an

> > > > autistic spectrum disorder. That means somewhere between 1 in every 10

> > > > and 1 in every 14 children with Down syndrome will also have an

> > > > autistic spectrum disorder. This is much higher than the incidence

> > > > rate for children without Down syndrome. According to the information

> > > > that is available, children with Down syndrome are often not diagnosed

> > > > or evaluated for autism spectrum disorders until much later in life.

> > > > The average age of diagnosis in children being between 9 and 14 years

> > > > old. I have heard from families whose adult children with Down

> > > > syndrome are only now being diagnosed as also having autism. "

> > > > (http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

> > > >

> > > > Sherry, mom to 21 DS-Autism

> > > > PS welcome to the list!!!!

> > > >

> > > >

> > > >

[Guest guest]

Strange. i noticed that too. Wonder if there is a connection?

> >

> > Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

> >

> > Oh, another thing about Aimee that I wanted to ask about. I have heard the

food issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

> >

> > Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

> >

> > ~

> >

> >

[Guest guest]

I know that was totally a nightmare, but I could not help but laugh because I

had such a visual of a child (possibly mine!!!) doing this and jumping with

delight. Sorry to laugh, but you paint such a vivid picture.

I bet you were mad!!

What a mess.

> > >

> > > : As a parent, I too would be concerned. When my son was aninfant

> > > and toddler, I was so inexperienced with DS let alone ASD, that I just

> > > figured all his stranage behavior was caused by the DS. IT took many years

> > > (and I soooo regret not having the dx earlier to help my son) that his

> > > behavior became magnified by repition and longevity.

> >

>

>

>

>

>

[Guest guest]

Yep. We had a problem for a long while (gotten a little better) with ripping

pages in books and tearing all sorts of important papers he would get his hands

on.

Not sure where he learned the behavior.

>

> We had this same thing happen. The teacher was teaching about eggs, let the

kids drop the eggs on a paper and make them splat. Came in the living room one

day and Jake had taken 12 eggs and dropped them down the landing of our stairs

to the basement. He thought it was great. Started having to hid the eggs in

the frig so he would not get them out and drop them around the house.

>

> We als had an OT who taught how to rip paper. Thanks a lot...he still carries

this learned expereince and loves to rip up all his books. Way to go OT!

>

> Holly

>

>

[Guest guest]

We did gfcf a few years ago. Nothing changed except we had more meltdowns

because wasn't eating. My other kids didn't show any behavior changes

either.

When he was little, we tried letting him be the judge of his own hunger. He

doesn't eat, when left to his own devices. Not at all. He doesn't drink much

either. He was near the top of the growth charts when he nursed but as soon as

he weaned, he dropped FAST and 4 mos' later was dx'd with failure to thrive.

He won't drink instant breakfast, ensure, or any of that stuff. He's always

been just above the cut-off for a food tube. He's a very slow eater, too. He

can spend 45 minutes eating one hot dog (no bun).

We found out this year that also has reactive hypoglycemia. Which means

his brain is super-sensitive to

Blood sugar changes. Which means that skipped meals=devastating meltdowns.

He just doesn't recognize hunger.

Sent from my iPhone

On Aug 8, 2010, at 6:48 PM, " agirlnamedsuess21 "

wrote:

In my experience, kids will eventually eat when their stomach growls.

If you only have certain choices, then he will eventually eat.

My guess is that he needs a different diet. When I was a child, I hated bread

and milk. What do you know that when I grew up and had 5 kids, I would realize

that the reason I was a picky eater was because the food I was eating hurt my

stomach. You might want to try a GFCF diet. It worked well for us.

> >

> > Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

> >

> > Oh, another thing about Aimee that I wanted to ask about. I have heard the

food issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

> >

> > Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

> >

> > ~

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

, surely there must be a medical term for what you describe(?) I recall

working with a young being that had the opposite issue-basically the part of the

brain that regulates EVER being full was " broken " . (This is a known

syndrome-disorder that right now I cannot recall the name of)

Beings with this disorder have to be constantly supervised, cabinets locked-even

kept away from garbage bins. Seems to me that if the medical community knows of

this disorder & ways to maintain it, then surely they would know what to do

about a mirror disorder(?)such as you describe???

Oh hon, more heart hugs to you & little dude.

Kris

> > >

> > > Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

> > >

> > > Oh, another thing about Aimee that I wanted to ask about. I have heard the

food issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

> > >

> > > Just curious if anyone has ever seen this with autism. I have not yet

found anyone with just DS who has such severe feeding issues.

> > >

> > > ~

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

It is called prader willy, not certain if I spelled this correctly. In my teen

years I sat for a boy with this disorder. It was only recognized as a true

disabiltiy by SSI in the early 90's.

Charlyne

Subject: Re: what does autism look like in people who have DS?

To:

Date: Monday, August 9, 2010, 12:51 AM

 

, surely there must be a medical term for what you describe(?) I recall

working with a young being that had the opposite issue-basically the part of the

brain that regulates EVER being full was " broken " . (This is a known

syndrome-disorder that right now I cannot recall the name of)

Beings with this disorder have to be constantly supervised, cabinets locked-even

kept away from garbage bins. Seems to me that if the medical community knows of

this disorder & ways to maintain it, then surely they would know what to do

about a mirror disorder(?)such as you describe???

Oh hon, more heart hugs to you & little dude.

Kris

> > >

> > > Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

> > >

> > > Oh, another thing about Aimee that I wanted to ask about. I have heard the

food issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

> > >

> > > Just curious if anyone has ever seen this with autism. I have not yet

found anyone with just DS who has such severe feeding issues.

> > >

> > > ~

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Thank you Charlyne!! It was driving me crazy-having a senior moment (or two or

three..)

My daughter in law's aunt in recent years had a baby diagnosed with

Prader-Willy. Alot more is known now I suppose as opposed to when the being I

referenced was born. Still, quite difficult to cope with. The being I worked

with (around 1998) was a teen & at great risk health wise as a result of the

disorder.

Hugs,

Kris

> > > >

> > > > Thank you so much to all of you for the replies. I can tell that this is

a great group and I know I will learn a lot from you.

> > > >

> > > > Oh, another thing about Aimee that I wanted to ask about. I have heard

the food issues can be an autism trait. Does anyone here have a child with

infantile anorexia? We got that diagnosis at the beginning of the year after

spending 3 weeks in an in-patient feeding program. Aimee does not appear to have

any desire to eat or drink. She either does not feel hunger/thirst or else she

doesn't care about those feelings. We finally had a g-tube placed back in

February. She gets about 90% of her calories and all of her fluids through the

tube. She is healthy now but still has very little interest in eating.

> > > >

> > > > Just curious if anyone has ever seen this with autism. I have not yet

found anyone with just DS who has such severe feeding issues.

> > > >

> > > > ~

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

LOL, been there, It's a devestating disability. There is more known about it but

no cure yet.

Charlyne 

Subject: Re: what does autism look like in people who have DS?

To:

Date: Monday, August 9, 2010, 1:58 AM

 

Thank you Charlyne!! It was driving me crazy-having a senior moment (or two or

three..)

My daughter in law's aunt in recent years had a baby diagnosed with

Prader-Willy. Alot more is known now I suppose as opposed to when the being I

referenced was born. Still, quite difficult to cope with. The being I worked

with (around 1998) was a teen & at great risk health wise as a result of the

disorder.

Hugs,

Kris

> > > >

> > > > Thank you so much to all of you for the replies. I can tell that this is

a great group and I know I will learn a lot from you.

> > > >

> > > > Oh, another thing about Aimee that I wanted to ask about. I have heard

the food issues can be an autism trait. Does anyone here have a child with

infantile anorexia? We got that diagnosis at the beginning of the year after

spending 3 weeks in an in-patient feeding program. Aimee does not appear to have

any desire to eat or drink. She either does not feel hunger/thirst or else she

doesn't care about those feelings. We finally had a g-tube placed back in

February. She gets about 90% of her calories and all of her fluids through the

tube. She is healthy now but still has very little interest in eating.

> > > >

> > > > Just curious if anyone has ever seen this with autism. I have not yet

found anyone with just DS who has such severe feeding issues.

> > > >

> > > > ~

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

But with Pradi-Willi, they overeat. Or is that what you are saying?

> > > >

> > > > Thank you so much to all of you for the replies. I can tell that this is

a great group and I know I will learn a lot from you.

> > > >

> > > > Oh, another thing about Aimee that I wanted to ask about. I have heard

the food issues can be an autism trait. Does anyone here have a child with

infantile anorexia? We got that diagnosis at the beginning of the year after

spending 3 weeks in an in-patient feeding program. Aimee does not appear to have

any desire to eat or drink. She either does not feel hunger/thirst or else she

doesn't care about those feelings. We finally had a g-tube placed back in

February. She gets about 90% of her calories and all of her fluids through the

tube. She is healthy now but still has very little interest in eating.

> > > >

> > > > Just curious if anyone has ever seen this with autism. I have not yet

found anyone with just DS who has such severe feeding issues.

> > > >

> > > > ~

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

" failure to thrive " is all we've been given. I think the inability to deal with

the body's signals is part of autism, no? is over-feeling in some areas

(hands on his " boy parts " and he's the kid who can't handle tags on clothes or

clothes that don't fit right...very tactile-sensitive in some ways!) and very

under-feeling with hunger, thirst, and peeing.

Sent from my iPhone

, surely there must be a medical term for what you describe(?) I recall

working with a young being that had the opposite issue-basically the part of the

brain that regulates EVER being full was " broken " . (This is a known

syndrome-disorder that right now I cannot recall the name of)

Beings with this disorder have to be constantly supervised, cabinets locked-even

kept away from garbage bins. Seems to me that if the medical community knows of

this disorder & ways to maintain it, then surely they would know what to do

about a mirror disorder(?)such as you describe???

Oh hon, more heart hugs to you & little dude.

Kris

> > >

> > > Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

> > >

> > > Oh, another thing about Aimee that I wanted to ask about. I have heard the

food issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

> > >

> > > Just curious if anyone has ever seen this with autism. I have not yet

found anyone with just DS who has such severe feeding issues.

> > >

> > > ~

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Kris, I think you're talking about Prader Willi syndrome.

, this is exactly what is going on with Aimee. If left to her own devices

she will go days without eating or drinking.

The only name we've been given for it is " feeding disorder " or " infantile

anorexia " . The second term seems most fitting but professionals don't seem to

like to use it (probably because of the inferred link to typical anorexia - but

kids with infantile anorexia don't have body image problems, they just don't

have a desire to eat). The only treatment we've heard about (and believe me,

I've researched!) is various forms of feeding therapy. So far feeding therapy

has not been helpful for Aimee. She knows HOW to eat. She just doesn't want

to. There is a medication called periactin (not sure if I'm spelling it right).

It's actually an antihistamine but it also can stimulate hunger as one of the

side effects. We saw a slight improvement in Aimee's appetite when she took it

but it only lasted for a few days and then went away as she adjusted to the

medication.

~

> > > >

> > > > Thank you so much to all of you for the replies. I can tell that this is

a great group and I know I will learn a lot from you.

> > > >

> > > > Oh, another thing about Aimee that I wanted to ask about. I have heard

the food issues can be an autism trait. Does anyone here have a child with

infantile anorexia? We got that diagnosis at the beginning of the year after

spending 3 weeks in an in-patient feeding program. Aimee does not appear to have

any desire to eat or drink. She either does not feel hunger/thirst or else she

doesn't care about those feelings. We finally had a g-tube placed back in

February. She gets about 90% of her calories and all of her fluids through the

tube. She is healthy now but still has very little interest in eating.

> > > >

> > > > Just curious if anyone has ever seen this with autism. I have not yet

found anyone with just DS who has such severe feeding issues.

> > > >

> > > > ~

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

, I think you said you've considered a feeding tube? Honestly I think it

was the best decision we've ever made for Aimee. She gained weight and height,

her devlopment improved and even her awareness of the world improved too (she

still spends a lot of time in her own world but before it was much worse - we

didn't even realize how pronounced it was until she began to improve). I know

that surgery is a huge thing to agree to but we are so glad we did it. No more

stress about getting her to eat, she's healthy (and the formula she gets through

the tube makes sure she's getting a balanced diet) and we can tackle the eating

issues at a slower, less-stressed pace.

If you have questions about it feel free to email me off-list. I've also posted

quite a bit about our g-tube experiences on my blog at

browneyedblessings.blogspot.com

~

>

> " failure to thrive " is all we've been given. I think the inability to deal

with the body's signals is part of autism, no? is over-feeling in some

areas (hands on his " boy parts " and he's the kid who can't handle tags on

clothes or clothes that don't fit right...very tactile-sensitive in some ways!)

and very under-feeling with hunger, thirst, and peeing.

>

>

>

[Guest guest]

We do not know when we have to urinate either. My girls and I will go all day

and not go to the bathroom, until we are dying to go.

I never put the two together, but now I am thinking that my son is having potty

accidents because of the mixed signals in the brain. Hmmm... something to

consider.

> > > >

> > > > Thank you so much to all of you for the replies. I can tell that this is

a great group and I know I will learn a lot from you.

> > > >

> > > > Oh, another thing about Aimee that I wanted to ask about. I have heard

the food issues can be an autism trait. Does anyone here have a child with

infantile anorexia? We got that diagnosis at the beginning of the year after

spending 3 weeks in an in-patient feeding program. Aimee does not appear to have

any desire to eat or drink. She either does not feel hunger/thirst or else she

doesn't care about those feelings. We finally had a g-tube placed back in

February. She gets about 90% of her calories and all of her fluids through the

tube. She is healthy now but still has very little interest in eating.

> > > >

> > > > Just curious if anyone has ever seen this with autism. I have not yet

found anyone with just DS who has such severe feeding issues.

> > > >

> > > > ~

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

,

My son has a problem with low blood sugar as well. He has to eat every 3 hours

and always has to have protein each and every time. If he is going to have a

cookie then it has to be just after a large meal with a good amount of protein.

Once, he was sick and did not eat for awhile but drank some pop and went to bed,

he never woke up. I found him covered in sweat and unconscious. Took to ER

and his blood sugar was 20. He does eat protein really well now but he wants

mayo on it. Or he just dips it in mayo. MAYO is a must around here.... I buy 3

jars at a time!!!!! karmen mom to Talon 14 DS/Autism

To:

From: macookson@...

Date: Sun, 8 Aug 2010 21:31:34 -0700

Subject: Re: Re: what does autism look like in people who have DS?

We did gfcf a few years ago. Nothing changed except we had more meltdowns

because wasn't eating. My other kids didn't show any behavior changes

either.

When he was little, we tried letting him be the judge of his own hunger. He

doesn't eat, when left to his own devices. Not at all. He doesn't drink much

either. He was near the top of the growth charts when he nursed but as soon as

he weaned, he dropped FAST and 4 mos' later was dx'd with failure to thrive.

He won't drink instant breakfast, ensure, or any of that stuff. He's always been

just above the cut-off for a food tube. He's a very slow eater, too. He can

spend 45 minutes eating one hot dog (no bun).

We found out this year that also has reactive hypoglycemia. Which means his

brain is super-sensitive to

Blood sugar changes. Which means that skipped meals=devastating meltdowns.

He just doesn't recognize hunger.

Sent from my iPhone

On Aug 8, 2010, at 6:48 PM, " agirlnamedsuess21 "

wrote:

In my experience, kids will eventually eat when their stomach growls.

If you only have certain choices, then he will eventually eat.

My guess is that he needs a different diet. When I was a child, I hated bread

and milk. What do you know that when I grew up and had 5 kids, I would realize

that the reason I was a picky eater was because the food I was eating hurt my

stomach. You might want to try a GFCF diet. It worked well for us.

> >

> > Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

> >

> > Oh, another thing about Aimee that I wanted to ask about. I have heard the

food issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

> >

> > Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

> >

> > ~

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Prader -Willis Syndrome are the terrible over eaters. Hypoglycemic reaction

is fairly common in those without fat stores. Timers, PECS, and First we

do this and then we do...... All may help behavior direct the eating.

>

>

> , surely there must be a medical term for what you describe(?) I recall

> working with a young being that had the opposite issue-basically the part of

> the brain that regulates EVER being full was " broken " . (This is a known

> syndrome-disorder that right now I cannot recall the name of)

>

> Beings with this disorder have to be constantly supervised, cabinets

> locked-even kept away from garbage bins. Seems to me that if the medical

> community knows of this disorder & ways to maintain it, then surely they

> would know what to do about a mirror disorder(?)such as you describe???

>

> Oh hon, more heart hugs to you & little dude.

> Kris

>

>

>

> > > >

> > > > Thank you so much to all of you for the replies. I can tell that this

> is a great group and I know I will learn a lot from you.

> > > >

> > > > Oh, another thing about Aimee that I wanted to ask about. I have

> heard the food issues can be an autism trait. Does anyone here have a child

> with infantile anorexia? We got that diagnosis at the beginning of the year

> after spending 3 weeks in an in-patient feeding program. Aimee does not

> appear to have any desire to eat or drink. She either does not feel

> hunger/thirst or else she doesn't care about those feelings. We finally had

> a g-tube placed back in February. She gets about 90% of her calories and all

> of her fluids through the tube. She is healthy now but still has very little

> interest in eating.

> > > >

> > > > Just curious if anyone has ever seen this with autism. I have not yet

> found anyone with just DS who has such severe feeding issues.

> > > >

> > > > ~

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

would so totally freak out...i love the idea of gaining weight, tho.

I'll check out your blog! Thanks for sharing.

Sent from my iPhone

, I think you said you've considered a feeding tube? Honestly I think it was

the best decision we've ever made for Aimee. She gained weight and height, her

devlopment improved and even her awareness of the world improved too (she still

spends a lot of time in her own world but before it was much worse - we didn't

even realize how pronounced it was until she began to improve). I know that

surgery is a huge thing to agree to but we are so glad we did it. No more stress

about getting her to eat, she's healthy (and the formula she gets through the

tube makes sure she's getting a balanced diet) and we can tackle the eating

issues at a slower, less-stressed pace.

If you have questions about it feel free to email me off-list. I've also posted

quite a bit about our g-tube experiences on my blog at

browneyedblessings.blogspot.com

~

>

> " failure to thrive " is all we've been given. I think the inability to deal

with the body's signals is part of autism, no? is over-feeling in some

areas (hands on his " boy parts " and he's the kid who can't handle tags on

clothes or clothes that don't fit right...very tactile-sensitive in some ways!)

and very under-feeling with hunger, thirst, and peeing.

>

>

>

[Guest guest]

No timers here. perseverates on them or gets anxious because of them,

depending on the day.

For a while we did sticker charts for each meal. He got tired of it. We've

tried ignoring not eating and lavishing attention for every bite. He didn't

recognize that we were ignoring him and just talked and talked (Asperger's).

He understands that he needs to eat. We've read Magic School Bus Gets Eaten.

He just dislikes eating. He had reflux as a baby but has been on prilosec for a

good year or more. Before that, we tried Zantac and another liquid one but he

was unable to stand the flavor. We had to wait til he could swallow pills.

You should see the build-up to his first bite of any meal. It always looks like

he's fully expecting that first bite to be battery acid or something.

Sent from my iPhone

Prader -Willis Syndrome are the terrible over eaters. Hypoglycemic reaction

is fairly common in those without fat stores. Timers, PECS, and First we

do this and then we do...... All may help behavior direct the eating.

>

>

> , surely there must be a medical term for what you describe(?) I recall

> working with a young being that had the opposite issue-basically the part of

> the brain that regulates EVER being full was " broken " . (This is a known

> syndrome-disorder that right now I cannot recall the name of)

>

> Beings with this disorder have to be constantly supervised, cabinets

> locked-even kept away from garbage bins. Seems to me that if the medical

> community knows of this disorder & ways to maintain it, then surely they

> would know what to do about a mirror disorder(?)such as you describe???

>

> Oh hon, more heart hugs to you & little dude.

> Kris

>

>

>

> > > >

> > > > Thank you so much to all of you for the replies. I can tell that this

> is a great group and I know I will learn a lot from you.

> > > >

> > > > Oh, another thing about Aimee that I wanted to ask about. I have

> heard the food issues can be an autism trait. Does anyone here have a child

> with infantile anorexia? We got that diagnosis at the beginning of the year

> after spending 3 weeks in an in-patient feeding program. Aimee does not

> appear to have any desire to eat or drink. She either does not feel

> hunger/thirst or else she doesn't care about those feelings. We finally had

> a g-tube placed back in February. She gets about 90% of her calories and all

> of her fluids through the tube. She is healthy now but still has very little

> interest in eating.

> > > >

> > > > Just curious if anyone has ever seen this with autism. I have not yet

> found anyone with just DS who has such severe feeding issues.

> > > >

> > > > ~

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Wow, that was a scary trip to the ER!!! I can't even imagine.

Sent from my iPhone

,

My son has a problem with low blood sugar as well. He has to eat every 3 hours

and always has to have protein each and every time. If he is going to have a

cookie then it has to be just after a large meal with a good amount of protein.

Once, he was sick and did not eat for awhile but drank some pop and went to bed,

he never woke up. I found him covered in sweat and unconscious. Took to ER

and his blood sugar was 20. He does eat protein really well now but he wants

mayo on it. Or he just dips it in mayo. MAYO is a must around here.... I buy 3

jars at a time!!!!! karmen mom to Talon 14 DS/Autism

To:

From: macookson@...

Date: Sun, 8 Aug 2010 21:31:34 -0700

Subject: Re: Re: what does autism look like in people who have DS?

We did gfcf a few years ago. Nothing changed except we had more meltdowns

because wasn't eating. My other kids didn't show any behavior changes

either.

When he was little, we tried letting him be the judge of his own hunger. He

doesn't eat, when left to his own devices. Not at all. He doesn't drink much

either. He was near the top of the growth charts when he nursed but as soon as

he weaned, he dropped FAST and 4 mos' later was dx'd with failure to thrive.

He won't drink instant breakfast, ensure, or any of that stuff. He's always been

just above the cut-off for a food tube. He's a very slow eater, too. He can

spend 45 minutes eating one hot dog (no bun).

We found out this year that also has reactive hypoglycemia. Which means his

brain is super-sensitive to

Blood sugar changes. Which means that skipped meals=devastating meltdowns.

He just doesn't recognize hunger.

Sent from my iPhone

On Aug 8, 2010, at 6:48 PM, " agirlnamedsuess21 "

wrote:

In my experience, kids will eventually eat when their stomach growls.

If you only have certain choices, then he will eventually eat.

My guess is that he needs a different diet. When I was a child, I hated bread

and milk. What do you know that when I grew up and had 5 kids, I would realize

that the reason I was a picky eater was because the food I was eating hurt my

stomach. You might want to try a GFCF diet. It worked well for us.

Thank you so much to all of you for the replies. I can tell that this is a great

group and I know I will learn a lot from you.

Oh, another thing about Aimee that I wanted to ask about. I have heard the food

issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any desire

to eat or drink. She either does not feel hunger/thirst or else she doesn't care

about those feelings. We finally had a g-tube placed back in February. She gets

about 90% of her calories and all of her fluids through the tube. She is healthy

now but still has very little interest in eating.

Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

~

[Guest guest]

Thanks for posting. I'm waiting an evaluation as well. My son is 14. I will

be interested in catching up on the replies as I don't know exactly the

differences just that my son doesn't fit into either category neatly but rather

straddles the fence.

Here is our story through June 2010...

http://thekitchenexperiments.blogspot.com/2010/07/long-journey-to-peace.html

there are a few posts afterwards with updates.

>

> I am sure there has been much discussion of this on the group but I'm not

having any luck finding them.

>

> Can someone help me understand what autism looks like in people who have down

syndrome? Are the traits different? Is there anything that is absent or

anything added? Just trying to do my own research while we wait for our

evaluation.

>

> Thanks!

>

> ~

> browneyedblessings.blogspot.com

>

[Guest guest]

http://www.riverbendds.org/index.htm

I found this in my bookmarks, some info on autism in ds

Belinda

[Guest guest]

Sorry it didnt go where it was aposed to , type autism in the search boxes and

the article will come up.

>

>

> http://www.riverbendds.org/index.htm

>

>

>

> I found this in my bookmarks, some info on autism in ds

> Belinda

>

[Guest guest]

I just remembered where I saw a useful checklist.

http://www.interventionservices.com.au/files/files/Dual%20Diagnosis%20DS-ASD%20L\

iterature%20review.pdf

on the very last page or two there is a organized chart of the DSM-IV criteria

and how common each thing is in kids who have Down syndrome without autism.

>

> I am sure there has been much discussion of this on the group but I'm not

having any luck finding them.

>

> Can someone help me understand what autism looks like in people who have down

syndrome? Are the traits different? Is there anything that is absent or

anything added? Just trying to do my own research while we wait for our

evaluation.

>

> Thanks!

>

> ~

> browneyedblessings.blogspot.com

>

[Guest guest]

Thanks for listing this link. I stored a copy, which I am sure will be useful to

his future doctor in reassessing that he does have the dual diagnosis. He meets

all criteria and oddly, he fits in both type 1 and type 2, depending on exactly

what age you are considering. (?)

> >

> > I am sure there has been much discussion of this on the group but I'm not

having any luck finding them.

> >

> > Can someone help me understand what autism looks like in people who have

down syndrome? Are the traits different? Is there anything that is absent or

anything added? Just trying to do my own research while we wait for our

evaluation.

> >

> > Thanks!

> >

> > ~

> > browneyedblessings.blogspot.com

> >

>

[Guest guest]

I finally found a primary care with a developmental speciaist. After 14years

got screened. Report is nearly done.

>

> ,

> I am in no way an expert..only a mom for 21 yrs of a kid with dual dx. What

Kris said is key...get as much info as you can about her medical condition; rule

out everything top to bottom. Many autistic symptoms come from a physical

disease or pain that is unable to be expressed by the child. Get started asap on

a form of communication for her...sign, AAC, pecs...whatever.

>

> Sometimes it is easier to get the autism dx from a center that specializes in

Autism...don't know where you are. My opinion? it's never too early. Every week

counts with these kids. And another completely subjective opinion...she sure

sounds like she could very well have autism to me.

>

> Again just my opinion...hope you get an appointment soon and some answers.

> Sherry

>

>

>

>