Re: Variability in DS true variability, toxic overload, or both?/Kennedy Krieger Experience

[Guest guest]

Whoa! Holly, Others...

Could you please weigh in here? This recent post about such a negative

experience at Kennedy Krieger is making me extremely anxious. I met Dr. Capone

last year and since then have been trying to find a way to have my daughter,

Aubrey, (11, dstr21, pddnos, and hearing impaired) evaluated by his team. It

will take a lot of money to get her to Baltimore, land from Hawai'i and this

was a extremely discouraging post. Talk about stripping a parent of hope. AUWE!

We don't have DS/Autism " specialists " growing in trees here in Hawai'i and most

that we've seen are so ill-equipped to

provide appropriate supports. If the Kennedy Krieger Institute isn't the place

to go where the heck else does one take their child for an evaluation and

recommendations?

" Lost " in Hawai'i and I'm not referring to the drama series filmed here in

Haleiwa!

Mahalo for any restoration of hope!

Desi

Mililani, hi

________________________________

To:

Sent: Thu, January 14, 2010 1:56:30 PM

Subject: RE: Variability in DS true variability, toxic overload, or

both?

Um, well I may get kicked off this list before I even start...I live not too far

from Kennedy K.  ...as far as the clinic for DS/autism, well, it has been a

waste of time for us....I cannot make definite judgments about people's

character or motive in how they practice, but I went with my insurance paying a

heap for the visit only to find that my needs and concerns were all being

steered toward one goal...trying to find a reason to prescribe risperadol to my

son....oh, only a " low dose " of this anti psychotic drug (that can grow breasts

on boys.) 

My husband who is a physician is adamantly against this as am I for any child to

be experimented on at this point with this drug....we did not see, after viewing

the papers presented to us about the use of this drug for DS/autism, any

justification.  I went hoping to find if other children had the same severe lack

of growth as Wesley did and also with questions about other aspects of his

development that baffle us...I did not feel any of these things were really

listened to.....the drug was prescribed and I was given before and after papers

to fill out ...this was a research visit, not a doctor's visit and I guess I

should have put up a fuss about being billed for it.....

this is wrong medical practice and not only that, my son is on Prozac and also

had a heart condition that was yet unrepaired and this drug should not have been

given to a child with Wesley's complicated health problems....I do not consider

that particular place the " DS-Autism specialists "   ...yes they do research and I

do hope good comes from some of their research for our children's sakes....  the

world of DS autism has no experts that truly know what to tell parents.....at

least I have not found any...I personally have received more help from the

parents on lists like this...

I am not mentioning any doctors' names and if he looks here, well he is a nice

friendly guy....but I just do not agree with how he proceeds with his medical

practice...

also my hats off to anyone who takes your child for research studies....I cannot

take my son...I cannot waste a day of his life against his choice and I know if

he understood the choice, no way would he want to go.....he has enough doc

visits surgeries interventions...I cannot add that to his plate....but I do

admire people who can find the energy and time to do that!!  Wesley will not eat

the free lunch they offer and my thighs do not need it....

Annie

To:

From: desimckenzie@...

Date: Thu, 14 Jan 2010 09:49:27 -0800

Subject: Re: Variability in DS true variability, toxic overload,  or

both?

 

   

     

     

      I believe Dr. Capone was speaking of the Post Traumatic Stress related to

multiple

procedures, stays in the hospital etc (which are common in children with Down

Syndrome

because of the many health problems most children with DS have)...and how this

could

be a trigger...I need to review his talks again...

He also spoke of a new research project they have started on boys with Down

Syndrome/Autism...

boy do I have to get Aubrey to Kennedy Krieger...I wish money grew on trees...

desi

________________________________

To:

Sent: Thu, January 14, 2010 6:30:01 AM

Subject: Re: Variability in DS true variability, toxic overload, or

both?

 

So if susrgery could be implicated - then I wonder if it is not the surgery,

but the ANESTHESIA>? ?

Where are all the research docs when we need them????

On Thu, Jan 14, 2010 at 3:45 AM, Desi McKenzie <desimckenzie@ yahoo.com>wrote:

>

>

> I don't think you're nuts at all. I'll bet that if we all paid very close

> attention and found a common thread outside of the suppressed immune system

> we could offer more to point to the cause of autism than one would think.

>

> I have my own " crazy " hypothesis. Aubrey, 11, dstr21, pddnos, hearing

> impaired had TWO ear surgeries (tympanomastoidecto mies) in the space of 3

> months during her 9th year. She had horrible ear infections that developed

> into Pseudomonas infections in both ears most probably because of her low

> tone which caused lax tubing and fluid just sat there...We lived in the ENT

> office for the first 8 years or so of her life...ENT had to slit behind each

> of her ears and go in to clean out the infection supposedly before it spread

> to her brain...

>

> ly I think this infection probably did spread to her brain

> regardless because very shortly after the second ear surgery she started

> showing the signs of autism...It should also be mentioned that Dr. Capone

> cited multiple surgeries, hospitalizations and the resulting PTSD as another

> possible trigger when I heard him speak at the NDSC Conference last

> August...

>

> Hmmm? Nice to be able to share without being laughed at!

>

> Desi

> Mililani, Hi

>

> ____________ _________ _________ __

> From: " leos02sbcglobal (DOT) net <leos02%40sbcglobal .net> " <

> leos02sbcglobal (DOT) net <leos02%40sbcglobal .net>>

> To: @yahoogrou ps.com <%40yahoog roups.com>

> Sent: Wed, January 13, 2010 4:54:16 PM

> Subject: Variability in DS true variability, toxic overload, or

> both?

>

>

> After getting Mina diagnosed with ASD, I started to wonder if the

> variability in DS is true variability or maybe something along the spectrum

> because of suppressed immune function in DS. I mean, I know that there are

> metabolic problems possibly because of the third chromosome, but I also

> wonder if much of what we attribute to that or low tone, whatever, is really

> toxic overload that just hasn't gotten to full blown autism. Maybe that

> would explain why some children with DS don't seem to stim much or anything

> and others are just crazy stimmers, obsessors, things like that. Anyone

> wonder the same thing, or am I just nuts?! Well, don't answer that, lol!

>

>

[Guest guest]

Desi,

We live in Baltimore and took Quinn to KKI to see that doctor last year. I

am so glad we live nearby because I would have been pissed if I made a

special expensive trip for it! Dr. Capone told me with a straight face

(after spending less than a half hour with my son) that he did not have

Autism. He said that instead it appeared Quinn was done developing (at the

age of 5) and would never learn to talk or socialize. Then the man

suggested that we try visuals (PECS etc) to help him communicate! Wow, why

didn’t all those speech therapists we have been seeing since Quinn was born

think of that??? Oh yeah, they did! Honestly the first time we met Dr.

Capone when Quinn was two, I was really impressed, this time not so much.

Maybe he was having an off day but doctors shouldn’t say things like that to

parents no matter what. It sent me into a deep depression for months, it

was horrible.

-Amy

_____

From: [mailto: ] On Behalf

Of Desi McKenzie

Sent: Friday, January 15, 2010 3:43 AM

To:

Subject: Re: Variability in DS true variability, toxic overload,

or both?/Kennedy Krieger Experience

Whoa! Holly, Others...

Could you please weigh in here? This recent post about such a negative

experience at Kennedy Krieger is making me extremely anxious. I met Dr.

Capone last year and since then have been trying to find a way to have my

daughter,

Aubrey, (11, dstr21, pddnos, and hearing impaired) evaluated by his team. It

will take a lot of money to get her to Baltimore, land from Hawai'i and

this was a extremely discouraging post. Talk about stripping a parent of

hope. AUWE!

We don't have DS/Autism " specialists " growing in trees here in Hawai'i and

most that we've seen are so ill-equipped to

provide appropriate supports. If the Kennedy Krieger Institute isn't the

place to go where the heck else does one take their child for an evaluation

and recommendations?

" Lost " in Hawai'i and I'm not referring to the drama series filmed here in

Haleiwa!

Mahalo for any restoration of hope!

Desi

Mililani, hi

________________________________

From: Anne Haroun <tabuhlilive (DOT) <mailto:tabuhli%40live.com> com>

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Sent: Thu, January 14, 2010 1:56:30 PM

Subject: RE: Variability in DS true variability, toxic overload,

or both?

Um, well I may get kicked off this list before I even start...I live not too

far from Kennedy K. ...as far as the clinic for DS/autism, well, it has

been a waste of time for us....I cannot make definite judgments about

people's character or motive in how they practice, but I went with my

insurance paying a heap for the visit only to find that my needs and

concerns were all being steered toward one goal...trying to find a reason to

prescribe risperadol to my son....oh, only a " low dose " of this anti

psychotic drug (that can grow breasts on boys.)

My husband who is a physician is adamantly against this as am I for any

child to be experimented on at this point with this drug....we did not see,

after viewing the papers presented to us about the use of this drug for

DS/autism, any justification. I went hoping to find if other children had

the same severe lack of growth as Wesley did and also with questions about

other aspects of his development that baffle us...I did not feel any of

these things were really listened to.....the drug was prescribed and I was

given before and after papers to fill out ...this was a research visit, not

a doctor's visit and I guess I should have put up a fuss about being billed

for it.....

this is wrong medical practice and not only that, my son is on Prozac and

also had a heart condition that was yet unrepaired and this drug should not

have been given to a child with Wesley's complicated health problems....I do

not consider that particular place the " DS-Autism specialists " ...yes they

do research and I do hope good comes from some of their research for our

children's sakes.... the world of DS autism has no experts that truly know

what to tell parents.....at least I have not found any...I personally have

received more help from the parents on lists like this...

I am not mentioning any doctors' names and if he looks here, well he is a

nice friendly guy....but I just do not agree with how he proceeds with his

medical practice...

also my hats off to anyone who takes your child for research studies....I

cannot take my son...I cannot waste a day of his life against his choice and

I know if he understood the choice, no way would he want to go.....he has

enough doc visits surgeries interventions...I cannot add that to his

plate....but I do admire people who can find the energy and time to do

that!! Wesley will not eat the free lunch they offer and my thighs do not

need it....

Annie

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

From: desimckenzie@ <mailto:desimckenzie%40yahoo.com> yahoo.com

Date: Thu, 14 Jan 2010 09:49:27 -0800

Subject: Re: Variability in DS true variability, toxic overload,

or both?

I believe Dr. Capone was speaking of the Post Traumatic Stress related

to multiple

procedures, stays in the hospital etc (which are common in children with

Down Syndrome

because of the many health problems most children with DS have)...and how

this could

be a trigger...I need to review his talks again...

He also spoke of a new research project they have started on boys with Down

Syndrome/Autism...

boy do I have to get Aubrey to Kennedy Krieger...I wish money grew on

trees...

desi

________________________________

From: Sara Cohen <pastmidvale@ <mailto:pastmidvale%40gmail.com> gmail.com>

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Sent: Thu, January 14, 2010 6:30:01 AM

Subject: Re: Variability in DS true variability, toxic overload,

or both?

So if susrgery could be implicated - then I wonder if it is not the surgery,

but the ANESTHESIA>? ?

Where are all the research docs when we need them????

On Thu, Jan 14, 2010 at 3:45 AM, Desi McKenzie <desimckenzie@

yahoo.com>wrote:

>

>

> I don't think you're nuts at all. I'll bet that if we all paid very close

> attention and found a common thread outside of the suppressed immune

system

> we could offer more to point to the cause of autism than one would think.

>

> I have my own " crazy " hypothesis. Aubrey, 11, dstr21, pddnos, hearing

> impaired had TWO ear surgeries (tympanomastoidecto mies) in the space of 3

> months during her 9th year. She had horrible ear infections that developed

> into Pseudomonas infections in both ears most probably because of her low

> tone which caused lax tubing and fluid just sat there...We lived in the

ENT

> office for the first 8 years or so of her life...ENT had to slit behind

each

> of her ears and go in to clean out the infection supposedly before it

spread

> to her brain...

>

> ly I think this infection probably did spread to her brain

> regardless because very shortly after the second ear surgery she started

> showing the signs of autism...It should also be mentioned that Dr. Capone

> cited multiple surgeries, hospitalizations and the resulting PTSD as

another

> possible trigger when I heard him speak at the NDSC Conference last

> August...

>

> Hmmm? Nice to be able to share without being laughed at!

>

> Desi

> Mililani, Hi

>

> ____________ _________ _________ __

> From: " leos02sbcglobal (DOT) net <leos02%40sbcglobal .net> " <

> leos02sbcglobal (DOT) net <leos02%40sbcglobal .net>>

> To: @yahoogrou ps.com <%40yahoog roups.com>

> Sent: Wed, January 13, 2010 4:54:16 PM

> Subject: Variability in DS true variability, toxic overload,

or

> both?

>

>

> After getting Mina diagnosed with ASD, I started to wonder if the

> variability in DS is true variability or maybe something along the

spectrum

> because of suppressed immune function in DS. I mean, I know that there are

> metabolic problems possibly because of the third chromosome, but I also

> wonder if much of what we attribute to that or low tone, whatever, is

really

> toxic overload that just hasn't gotten to full blown autism. Maybe that

> would explain why some children with DS don't seem to stim much or

anything

> and others are just crazy stimmers, obsessors, things like that. Anyone

> wonder the same thing, or am I just nuts?! Well, don't answer that, lol!

>

>

[Guest guest]

Who was it that started a post with “Dr. Keck?” I remembered taking Isaac

to her when he was six months old for an evaluation. When I saw her name I

looked her up. She runs a quarterly support group for parents who have

children with a DS/ASD diagnosis. She is the Midwest expert on Down

syndrome and autism? She might not agree to that but Google her. I don’t

know if she is doing research but research is always ten years behind

practice. She sure had a lot of common sense when I met her twelve and a

half years ago. I was thinking of taking both boys to her. She had an

office Advocate Lutheran Children’s Hospital/Center in Park Ridge, IL when

we saw her. This is the best facility we have visited for kids. I really

liked her the one time I met her. Maybe someone will have more up-to-date

info.

I also liked the guy from Kennedy Krieger when I met him but he had

absolutely nothing to offer. If someone goes to Kennedy looking for a

“plan” for their child or an answer to the quirkiness, I don’t know if he

can do that.

I always go back to what Sara says about finding good people to write

behavior plans. I have a call into someone right now hoping we can figure

out how to help Isaac “go with the flow” better.

Lori

_____

From: [mailto: ] On Behalf

Of Desi McKenzie

Sent: Friday, January 15, 2010 2:43 AM

To:

Subject: Re: Variability in DS true variability, toxic overload,

or both?/Kennedy Krieger Experience

Whoa! Holly, Others...

Could you please weigh in here? This recent post about such a negative

experience at Kennedy Krieger is making me extremely anxious. I met Dr.

Capone last year and since then have been trying to find a way to have my

daughter,

Aubrey, (11, dstr21, pddnos, and hearing impaired) evaluated by his team. It

will take a lot of money to get her to Baltimore, land from Hawai'i and

this was a extremely discouraging post. Talk about stripping a parent of

hope. AUWE!

We don't have DS/Autism " specialists " growing in trees here in Hawai'i and

most that we've seen are so ill-equipped to

provide appropriate supports. If the Kennedy Krieger Institute isn't the

place to go where the heck else does one take their child for an evaluation

and recommendations?

" Lost " in Hawai'i and I'm not referring to the drama series filmed here in

Haleiwa!

Mahalo for any restoration of hope!

Desi

Mililani, hi

________________________________

From: Anne Haroun <tabuhlilive (DOT) <mailto:tabuhli%40live.com> com>

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Sent: Thu, January 14, 2010 1:56:30 PM

Subject: RE: Variability in DS true variability, toxic overload,

or both?

Um, well I may get kicked off this list before I even start...I live not too

far from Kennedy K. ...as far as the clinic for DS/autism, well, it has

been a waste of time for us....I cannot make definite judgments about

people's character or motive in how they practice, but I went with my

insurance paying a heap for the visit only to find that my needs and

concerns were all being steered toward one goal...trying to find a reason to

prescribe risperadol to my son....oh, only a " low dose " of this anti

psychotic drug (that can grow breasts on boys.)

My husband who is a physician is adamantly against this as am I for any

child to be experimented on at this point with this drug....we did not see,

after viewing the papers presented to us about the use of this drug for

DS/autism, any justification. I went hoping to find if other children had

the same severe lack of growth as Wesley did and also with questions about

other aspects of his development that baffle us...I did not feel any of

these things were really listened to.....the drug was prescribed and I was

given before and after papers to fill out ...this was a research visit, not

a doctor's visit and I guess I should have put up a fuss about being billed

for it.....

this is wrong medical practice and not only that, my son is on Prozac and

also had a heart condition that was yet unrepaired and this drug should not

have been given to a child with Wesley's complicated health problems....I do

not consider that particular place the " DS-Autism specialists " ...yes they

do research and I do hope good comes from some of their research for our

children's sakes.... the world of DS autism has no experts that truly know

what to tell parents.....at least I have not found any...I personally have

received more help from the parents on lists like this...

I am not mentioning any doctors' names and if he looks here, well he is a

nice friendly guy....but I just do not agree with how he proceeds with his

medical practice...

also my hats off to anyone who takes your child for research studies....I

cannot take my son...I cannot waste a day of his life against his choice and

I know if he understood the choice, no way would he want to go.....he has

enough doc visits surgeries interventions...I cannot add that to his

plate....but I do admire people who can find the energy and time to do

that!! Wesley will not eat the free lunch they offer and my thighs do not

need it....

Annie

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

From: desimckenzie@ <mailto:desimckenzie%40yahoo.com> yahoo.com

Date: Thu, 14 Jan 2010 09:49:27 -0800

Subject: Re: Variability in DS true variability, toxic overload,

or both?

I believe Dr. Capone was speaking of the Post Traumatic Stress related

to multiple

procedures, stays in the hospital etc (which are common in children with

Down Syndrome

because of the many health problems most children with DS have)...and how

this could

be a trigger...I need to review his talks again...

He also spoke of a new research project they have started on boys with Down

Syndrome/Autism...

boy do I have to get Aubrey to Kennedy Krieger...I wish money grew on

trees...

desi

________________________________

From: Sara Cohen <pastmidvale@ <mailto:pastmidvale%40gmail.com> gmail.com>

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Sent: Thu, January 14, 2010 6:30:01 AM

Subject: Re: Variability in DS true variability, toxic overload,

or both?

So if susrgery could be implicated - then I wonder if it is not the surgery,

but the ANESTHESIA>? ?

Where are all the research docs when we need them????

On Thu, Jan 14, 2010 at 3:45 AM, Desi McKenzie <desimckenzie@

yahoo.com>wrote:

>

>

> I don't think you're nuts at all. I'll bet that if we all paid very close

> attention and found a common thread outside of the suppressed immune

system

> we could offer more to point to the cause of autism than one would think.

>

> I have my own " crazy " hypothesis. Aubrey, 11, dstr21, pddnos, hearing

> impaired had TWO ear surgeries (tympanomastoidecto mies) in the space of 3

> months during her 9th year. She had horrible ear infections that developed

> into Pseudomonas infections in both ears most probably because of her low

> tone which caused lax tubing and fluid just sat there...We lived in the

ENT

> office for the first 8 years or so of her life...ENT had to slit behind

each

> of her ears and go in to clean out the infection supposedly before it

spread

> to her brain...

>

> ly I think this infection probably did spread to her brain

> regardless because very shortly after the second ear surgery she started

> showing the signs of autism...It should also be mentioned that Dr. Capone

> cited multiple surgeries, hospitalizations and the resulting PTSD as

another

> possible trigger when I heard him speak at the NDSC Conference last

> August...

>

> Hmmm? Nice to be able to share without being laughed at!

>

> Desi

> Mililani, Hi

>

> ____________ _________ _________ __

> From: " leos02sbcglobal (DOT) net <leos02%40sbcglobal .net> " <

> leos02sbcglobal (DOT) net <leos02%40sbcglobal .net>>

> To: @yahoogrou ps.com <%40yahoog roups.com>

> Sent: Wed, January 13, 2010 4:54:16 PM

> Subject: Variability in DS true variability, toxic overload,

or

> both?

>

>

> After getting Mina diagnosed with ASD, I started to wonder if the

> variability in DS is true variability or maybe something along the

spectrum

> because of suppressed immune function in DS. I mean, I know that there are

> metabolic problems possibly because of the third chromosome, but I also

> wonder if much of what we attribute to that or low tone, whatever, is

really

> toxic overload that just hasn't gotten to full blown autism. Maybe that

> would explain why some children with DS don't seem to stim much or

anything

> and others are just crazy stimmers, obsessors, things like that. Anyone

> wonder the same thing, or am I just nuts?! Well, don't answer that, lol!

>

>

[Guest guest]

Sorry to strip your hope dear Desi, really really I am.......don't take me as

the final word though I will not take back anything I said....I am not here with

a bone to pick or a bandwagon to ride on....just sharing my own experience and I

am not a controversial sort..... but I felt bad for you coming all of this way

for a disappointment..if someone wants their child prescribed the R drug and

cannot find anyone to do it then by all means they should come....I cannot

fluff over what I said...I don't want to schmear the name of the doc...I made

up my mind after I went there that I do not have the time energy or desire to be

against anyone as Wesley's well being needs all of my time and effort.........I

am not a trouble maker...I am a kinda mild mannered sort......but you know our

children bring the tigress out of all of us.....

I went to Kennedy Krieger for the DS clinic the first few years of Wesley's

life.....same routine.....questionnaires of everything that happened through

pregnancy and up to that point....normal data collecting...I understand though

it is annoying, and then those first years I felt though Dr. X had not a lot new

to tell me that he was listening and trying to throw out ideas ....

I did not go for a few years but everyone in this area says " Well see Dr .....at

Ds clinic... " Even the pediatrician told me to do that so I thought " gotta go

and see... " ...my husband told me " don't go it is a waste of time " but I, like

you, cannot leave any stone unturned should the slightest good come out of it

for Wesley and as a result I was not pleased....I am not speaking behind

anyone's back....I know professionals should not talk about other

professionals.....but we are parents ...we have to tell what we think....if Dr.

X Yor Z are on this list....they should NOT be offended by any comments but be

glad for transparency and DO something about it to better their practice....if

they are not in it for the children's good then why are they even visiting the

list....surely that is why they come to get input and give some too....

I am really sorry if I stripped you of hope ...I feel sad to have done

that....truly...but maybe others posts will give you the hope back...Wesley is

10 ....if I lived in Hawaii I would try to see Dr. Jaquelyn McCandless author of

Children with Starving Brains.....I did not see her but she evaluated and

treated WEs long distance...it was not the cure all for him at all...but it did

give him better health all around and he has hardly ever had a cold since I

started following her advice but it costs a lot too.....she is in her 70.s.....a

young 70's but I do not know if she takes new patients on or if you would even

consider a DAN practitioner....I definitely received more help from her than any

other practitioner...

anyway, I would have loved to meet you if you came, but I would not think you

would be into that at this point!! All the best to you.....Annie

To:

From: desimckenzie@...

Date: Fri, 15 Jan 2010 00:42:35 -0800

Subject: Re: Variability in DS true variability, toxic overload, or

both?/Kennedy Krieger Experience

Whoa! Holly, Others...

Could you please weigh in here? This recent post about such a negative

experience at Kennedy Krieger is making me extremely anxious. I met Dr. Capone

last year and since then have been trying to find a way to have my daughter,

Aubrey, (11, dstr21, pddnos, and hearing impaired) evaluated by his team. It

will take a lot of money to get her to Baltimore, land from Hawai'i and this

was a extremely discouraging post. Talk about stripping a parent of hope. AUWE!

We don't have DS/Autism " specialists " growing in trees here in Hawai'i and most

that we've seen are so ill-equipped to

provide appropriate supports. If the Kennedy Krieger Institute isn't the place

to go where the heck else does one take their child for an evaluation and

recommendations?

" Lost " in Hawai'i and I'm not referring to the drama series filmed here in

Haleiwa!

Mahalo for any restoration of hope!

Desi

Mililani, hi

________________________________

To:

Sent: Thu, January 14, 2010 1:56:30 PM

Subject: RE: Variability in DS true variability, toxic overload, or

both?

Um, well I may get kicked off this list before I even start...I live not too far

from Kennedy K. ...as far as the clinic for DS/autism, well, it has been a

waste of time for us....I cannot make definite judgments about people's

character or motive in how they practice, but I went with my insurance paying a

heap for the visit only to find that my needs and concerns were all being

steered toward one goal...trying to find a reason to prescribe risperadol to my

son....oh, only a " low dose " of this anti psychotic drug (that can grow breasts

on boys.)

My husband who is a physician is adamantly against this as am I for any child to

be experimented on at this point with this drug....we did not see, after viewing

the papers presented to us about the use of this drug for DS/autism, any

justification. I went hoping to find if other children had the same severe lack

of growth as Wesley did and also with questions about other aspects of his

development that baffle us...I did not feel any of these things were really

listened to.....the drug was prescribed and I was given before and after papers

to fill out ...this was a research visit, not a doctor's visit and I guess I

should have put up a fuss about being billed for it.....

this is wrong medical practice and not only that, my son is on Prozac and also

had a heart condition that was yet unrepaired and this drug should not have been

given to a child with Wesley's complicated health problems....I do not consider

that particular place the " DS-Autism specialists " ...yes they do research and I

do hope good comes from some of their research for our children's sakes.... the

world of DS autism has no experts that truly know what to tell parents.....at

least I have not found any...I personally have received more help from the

parents on lists like this...

I am not mentioning any doctors' names and if he looks here, well he is a nice

friendly guy....but I just do not agree with how he proceeds with his medical

practice...

also my hats off to anyone who takes your child for research studies....I cannot

take my son...I cannot waste a day of his life against his choice and I know if

he understood the choice, no way would he want to go.....he has enough doc

visits surgeries interventions...I cannot add that to his plate....but I do

admire people who can find the energy and time to do that!! Wesley will not eat

the free lunch they offer and my thighs do not need it....

Annie

To:

From: desimckenzie@...

Date: Thu, 14 Jan 2010 09:49:27 -0800

Subject: Re: Variability in DS true variability, toxic overload, or

both?

I believe Dr. Capone was speaking of the Post Traumatic Stress related to

multiple

procedures, stays in the hospital etc (which are common in children with Down

Syndrome

because of the many health problems most children with DS have)...and how this

could

be a trigger...I need to review his talks again...

He also spoke of a new research project they have started on boys with Down

Syndrome/Autism...

boy do I have to get Aubrey to Kennedy Krieger...I wish money grew on trees...

desi

________________________________

To:

Sent: Thu, January 14, 2010 6:30:01 AM

Subject: Re: Variability in DS true variability, toxic overload, or

both?

So if susrgery could be implicated - then I wonder if it is not the surgery,

but the ANESTHESIA>? ?

Where are all the research docs when we need them????

On Thu, Jan 14, 2010 at 3:45 AM, Desi McKenzie <desimckenzie@ yahoo.com>wrote:

>

>

> I don't think you're nuts at all. I'll bet that if we all paid very close

> attention and found a common thread outside of the suppressed immune system

> we could offer more to point to the cause of autism than one would think.

>

> I have my own " crazy " hypothesis. Aubrey, 11, dstr21, pddnos, hearing

> impaired had TWO ear surgeries (tympanomastoidecto mies) in the space of 3

> months during her 9th year. She had horrible ear infections that developed

> into Pseudomonas infections in both ears most probably because of her low

> tone which caused lax tubing and fluid just sat there...We lived in the ENT

> office for the first 8 years or so of her life...ENT had to slit behind each

> of her ears and go in to clean out the infection supposedly before it spread

> to her brain...

>

> ly I think this infection probably did spread to her brain

> regardless because very shortly after the second ear surgery she started

> showing the signs of autism...It should also be mentioned that Dr. Capone

> cited multiple surgeries, hospitalizations and the resulting PTSD as another

> possible trigger when I heard him speak at the NDSC Conference last

> August...

>

> Hmmm? Nice to be able to share without being laughed at!

>

> Desi

> Mililani, Hi

>

> ____________ _________ _________ __

> From: " leos02sbcglobal (DOT) net <leos02%40sbcglobal .net> " <

> leos02sbcglobal (DOT) net <leos02%40sbcglobal .net>>

> To: @yahoogrou ps.com <%40yahoog roups.com>

> Sent: Wed, January 13, 2010 4:54:16 PM

> Subject: Variability in DS true variability, toxic overload, or

> both?

>

>

> After getting Mina diagnosed with ASD, I started to wonder if the

> variability in DS is true variability or maybe something along the spectrum

> because of suppressed immune function in DS. I mean, I know that there are

> metabolic problems possibly because of the third chromosome, but I also

> wonder if much of what we attribute to that or low tone, whatever, is really

> toxic overload that just hasn't gotten to full blown autism. Maybe that

> would explain why some children with DS don't seem to stim much or anything

> and others are just crazy stimmers, obsessors, things like that. Anyone

> wonder the same thing, or am I just nuts?! Well, don't answer that, lol!

>

>

[Guest guest]

That was me! Dr. Keck left Lutheran General several years ago and is now

out at St. ius in Hoffman Estates, IL. She runs a summer respite camp

and is very active in our local Ds support group. She was instrumental in

getting a group started in our area called Down syndrome Plus. It is

totally organized and run by the head of the local Ds group including food

and child care after Dr. Keck stressed that those of us in the “plus” group

are already too overwhelmed with our daily lives to work on something else.

J We only meet quarterly, which really helps, too.

From: [mailto: ] On Behalf

Of Lori

Sent: Friday, January 15, 2010 9:09 AM

To:

Subject: RE: Variability in DS true variability, toxic overload,

or both?/Kennedy Krieger Experience

Who was it that started a post with “Dr. Keck?” I remembered taking Isaac

to her when he was six months old for an evaluation. When I saw her name I

looked her up. She runs a quarterly support group for parents who have

children with a DS/ASD diagnosis. She is the Midwest expert on Down

syndrome and autism? She might not agree to that but Google her. I don’t

know if she is doing research but research is always ten years behind

practice. She sure had a lot of common sense when I met her twelve and a

half years ago. I was thinking of taking both boys to her. She had an

office Advocate Lutheran Children’s Hospital/Center in Park Ridge, IL when

we saw her. This is the best facility we have visited for kids. I really

liked her the one time I met her. Maybe someone will have more up-to-date

info.

I also liked the guy from Kennedy Krieger when I met him but he had

absolutely nothing to offer. If someone goes to Kennedy looking for a

“plan” for their child or an answer to the quirkiness, I don’t know if he

can do that.

I always go back to what Sara says about finding good people to write

behavior plans. I have a call into someone right now hoping we can figure

out how to help Isaac “go with the flow” better.

Lori

_____

From: <mailto:%40yahoogroups.com>

[mailto: <mailto:%40yahoogroups.com> ] On

Behalf

Of Desi McKenzie

Sent: Friday, January 15, 2010 2:43 AM

To: <mailto:%40yahoogroups.com>

Subject: Re: Variability in DS true variability, toxic overload,

or both?/Kennedy Krieger Experience

Whoa! Holly, Others...

Could you please weigh in here? This recent post about such a negative

experience at Kennedy Krieger is making me extremely anxious. I met Dr.

Capone last year and since then have been trying to find a way to have my

daughter,

Aubrey, (11, dstr21, pddnos, and hearing impaired) evaluated by his team. It

will take a lot of money to get her to Baltimore, land from Hawai'i and

this was a extremely discouraging post. Talk about stripping a parent of

hope. AUWE!

We don't have DS/Autism " specialists " growing in trees here in Hawai'i and

most that we've seen are so ill-equipped to

provide appropriate supports. If the Kennedy Krieger Institute isn't the

place to go where the heck else does one take their child for an evaluation

and recommendations?

" Lost " in Hawai'i and I'm not referring to the drama series filmed here in

Haleiwa!

Mahalo for any restoration of hope!

Desi

Mililani, hi

________________________________

From: Anne Haroun <tabuhlilive (DOT) <mailto:tabuhli%40live.com> com>

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Sent: Thu, January 14, 2010 1:56:30 PM

Subject: RE: Variability in DS true variability, toxic overload,

or both?

Um, well I may get kicked off this list before I even start...I live not too

far from Kennedy K. ...as far as the clinic for DS/autism, well, it has

been a waste of time for us....I cannot make definite judgments about

people's character or motive in how they practice, but I went with my

insurance paying a heap for the visit only to find that my needs and

concerns were all being steered toward one goal...trying to find a reason to

prescribe risperadol to my son....oh, only a " low dose " of this anti

psychotic drug (that can grow breasts on boys.)

My husband who is a physician is adamantly against this as am I for any

child to be experimented on at this point with this drug....we did not see,

after viewing the papers presented to us about the use of this drug for

DS/autism, any justification. I went hoping to find if other children had

the same severe lack of growth as Wesley did and also with questions about

other aspects of his development that baffle us...I did not feel any of

these things were really listened to.....the drug was prescribed and I was

given before and after papers to fill out ...this was a research visit, not

a doctor's visit and I guess I should have put up a fuss about being billed

for it.....

this is wrong medical practice and not only that, my son is on Prozac and

also had a heart condition that was yet unrepaired and this drug should not

have been given to a child with Wesley's complicated health problems....I do

not consider that particular place the " DS-Autism specialists " ...yes they

do research and I do hope good comes from some of their research for our

children's sakes.... the world of DS autism has no experts that truly know

what to tell parents.....at least I have not found any...I personally have

received more help from the parents on lists like this...

I am not mentioning any doctors' names and if he looks here, well he is a

nice friendly guy....but I just do not agree with how he proceeds with his

medical practice...

also my hats off to anyone who takes your child for research studies....I

cannot take my son...I cannot waste a day of his life against his choice and

I know if he understood the choice, no way would he want to go.....he has

enough doc visits surgeries interventions...I cannot add that to his

plate....but I do admire people who can find the energy and time to do

that!! Wesley will not eat the free lunch they offer and my thighs do not

need it....

Annie

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

From: desimckenzie@ <mailto:desimckenzie%40yahoo.com> yahoo.com

Date: Thu, 14 Jan 2010 09:49:27 -0800

Subject: Re: Variability in DS true variability, toxic overload,

or both?

I believe Dr. Capone was speaking of the Post Traumatic Stress related

to multiple

procedures, stays in the hospital etc (which are common in children with

Down Syndrome

because of the many health problems most children with DS have)...and how

this could

be a trigger...I need to review his talks again...

He also spoke of a new research project they have started on boys with Down

Syndrome/Autism...

boy do I have to get Aubrey to Kennedy Krieger...I wish money grew on

trees...

desi

________________________________

From: Sara Cohen <pastmidvale@ <mailto:pastmidvale%40gmail.com> gmail.com>

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Sent: Thu, January 14, 2010 6:30:01 AM

Subject: Re: Variability in DS true variability, toxic overload,

or both?

So if susrgery could be implicated - then I wonder if it is not the surgery,

but the ANESTHESIA>? ?

Where are all the research docs when we need them????

On Thu, Jan 14, 2010 at 3:45 AM, Desi McKenzie <desimckenzie@

yahoo.com>wrote:

>

>

> I don't think you're nuts at all. I'll bet that if we all paid very close

> attention and found a common thread outside of the suppressed immune

system

> we could offer more to point to the cause of autism than one would think.

>

> I have my own " crazy " hypothesis. Aubrey, 11, dstr21, pddnos, hearing

> impaired had TWO ear surgeries (tympanomastoidecto mies) in the space of 3

> months during her 9th year. She had horrible ear infections that developed

> into Pseudomonas infections in both ears most probably because of her low

> tone which caused lax tubing and fluid just sat there...We lived in the

ENT

> office for the first 8 years or so of her life...ENT had to slit behind

each

> of her ears and go in to clean out the infection supposedly before it

spread

> to her brain...

>

> ly I think this infection probably did spread to her brain

> regardless because very shortly after the second ear surgery she started

> showing the signs of autism...It should also be mentioned that Dr. Capone

> cited multiple surgeries, hospitalizations and the resulting PTSD as

another

> possible trigger when I heard him speak at the NDSC Conference last

> August...

>

> Hmmm? Nice to be able to share without being laughed at!

>

> Desi

> Mililani, Hi

>

> ____________ _________ _________ __

> From: " leos02sbcglobal (DOT) net <leos02%40sbcglobal .net> " <

> leos02sbcglobal (DOT) net <leos02%40sbcglobal .net>>

> To: @yahoogrou ps.com <%40yahoog roups.com>

> Sent: Wed, January 13, 2010 4:54:16 PM

> Subject: Variability in DS true variability, toxic overload,

or

> both?

>

>

> After getting Mina diagnosed with ASD, I started to wonder if the

> variability in DS is true variability or maybe something along the

spectrum

> because of suppressed immune function in DS. I mean, I know that there are

> metabolic problems possibly because of the third chromosome, but I also

> wonder if much of what we attribute to that or low tone, whatever, is

really

> toxic overload that just hasn't gotten to full blown autism. Maybe that

> would explain why some children with DS don't seem to stim much or

anything

> and others are just crazy stimmers, obsessors, things like that. Anyone

> wonder the same thing, or am I just nuts?! Well, don't answer that, lol!

>

>

[Guest guest]

Does she run a Down syndrome clinic at St. ius? Does she advertise

herself as a behavioral pediatrician? Isaac can use his insurance in

Illinois since that is where he was born. Do you think she has insights

that are helpful?

So you are in the western suburbs? We left the Chicago area after 20 years

for Madison.

Lori

_____

From: [mailto: ] On Behalf

Of L. Davenport

Sent: Friday, January 15, 2010 2:27 PM

To:

Subject: RE: Variability in DS true variability, toxic overload,

or both?/Kennedy Krieger Experience

That was me! Dr. Keck left Lutheran General several years ago and is now

out at St. ius in Hoffman Estates, IL. She runs a summer respite camp

and is very active in our local Ds support group. She was instrumental in

getting a group started in our area called Down syndrome Plus. It is

totally organized and run by the head of the local Ds group including food

and child care after Dr. Keck stressed that those of us in the “plus” group

are already too overwhelmed with our daily lives to work on something else.

J We only meet quarterly, which really helps, too.

From: @yahoogrou <mailto:%40yahoogroups.com> ps.com

[mailto:@yahoogrou <mailto:%40yahoogroups.com> ps.com] On

Behalf

Of Lori

Sent: Friday, January 15, 2010 9:09 AM

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Subject: RE: Variability in DS true variability, toxic overload,

or both?/Kennedy Krieger Experience

Who was it that started a post with “Dr. Keck?” I remembered taking Isaac

to her when he was six months old for an evaluation. When I saw her name I

looked her up. She runs a quarterly support group for parents who have

children with a DS/ASD diagnosis. She is the Midwest expert on Down

syndrome and autism? She might not agree to that but Google her. I don’t

know if she is doing research but research is always ten years behind

practice. She sure had a lot of common sense when I met her twelve and a

half years ago. I was thinking of taking both boys to her. She had an

office Advocate Lutheran Children’s Hospital/Center in Park Ridge, IL when

we saw her. This is the best facility we have visited for kids. I really

liked her the one time I met her. Maybe someone will have more up-to-date

info.

I also liked the guy from Kennedy Krieger when I met him but he had

absolutely nothing to offer. If someone goes to Kennedy looking for a

“plan” for their child or an answer to the quirkiness, I don’t know if he

can do that.

I always go back to what Sara says about finding good people to write

behavior plans. I have a call into someone right now hoping we can figure

out how to help Isaac “go with the flow” better.

Lori

_____

From: @yahoogrou <mailto:%40yahoogroups.com> ps.com

<mailto:%40yahoogroups.com>

[mailto:@yahoogrou <mailto:%40yahoogroups.com> ps.com

<mailto:%40yahoogroups.com> ] On

Behalf

Of Desi McKenzie

Sent: Friday, January 15, 2010 2:43 AM

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

<mailto:%40yahoogroups.com>

Subject: Re: Variability in DS true variability, toxic overload,

or both?/Kennedy Krieger Experience

Whoa! Holly, Others...

Could you please weigh in here? This recent post about such a negative

experience at Kennedy Krieger is making me extremely anxious. I met Dr.

Capone last year and since then have been trying to find a way to have my

daughter,

Aubrey, (11, dstr21, pddnos, and hearing impaired) evaluated by his team. It

will take a lot of money to get her to Baltimore, land from Hawai'i and

this was a extremely discouraging post. Talk about stripping a parent of

hope. AUWE!

We don't have DS/Autism " specialists " growing in trees here in Hawai'i and

most that we've seen are so ill-equipped to

provide appropriate supports. If the Kennedy Krieger Institute isn't the

place to go where the heck else does one take their child for an evaluation

and recommendations?

" Lost " in Hawai'i and I'm not referring to the drama series filmed here in

Haleiwa!

Mahalo for any restoration of hope!

Desi

Mililani, hi

________________________________

From: Anne Haroun <tabuhlilive (DOT) <mailto:tabuhli%40live.com> com>

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Sent: Thu, January 14, 2010 1:56:30 PM

Subject: RE: Variability in DS true variability, toxic overload,

or both?

Um, well I may get kicked off this list before I even start...I live not too

far from Kennedy K. ...as far as the clinic for DS/autism, well, it has

been a waste of time for us....I cannot make definite judgments about

people's character or motive in how they practice, but I went with my

insurance paying a heap for the visit only to find that my needs and

concerns were all being steered toward one goal...trying to find a reason to

prescribe risperadol to my son....oh, only a " low dose " of this anti

psychotic drug (that can grow breasts on boys.)

My husband who is a physician is adamantly against this as am I for any

child to be experimented on at this point with this drug....we did not see,

after viewing the papers presented to us about the use of this drug for

DS/autism, any justification. I went hoping to find if other children had

the same severe lack of growth as Wesley did and also with questions about

other aspects of his development that baffle us...I did not feel any of

these things were really listened to.....the drug was prescribed and I was

given before and after papers to fill out ...this was a research visit, not

a doctor's visit and I guess I should have put up a fuss about being billed

for it.....

this is wrong medical practice and not only that, my son is on Prozac and

also had a heart condition that was yet unrepaired and this drug should not

have been given to a child with Wesley's complicated health problems....I do

not consider that particular place the " DS-Autism specialists " ...yes they

do research and I do hope good comes from some of their research for our

children's sakes.... the world of DS autism has no experts that truly know

what to tell parents.....at least I have not found any...I personally have

received more help from the parents on lists like this...

I am not mentioning any doctors' names and if he looks here, well he is a

nice friendly guy....but I just do not agree with how he proceeds with his

medical practice...

also my hats off to anyone who takes your child for research studies....I

cannot take my son...I cannot waste a day of his life against his choice and

I know if he understood the choice, no way would he want to go.....he has

enough doc visits surgeries interventions...I cannot add that to his

plate....but I do admire people who can find the energy and time to do

that!! Wesley will not eat the free lunch they offer and my thighs do not

need it....

Annie

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

From: desimckenzie@ <mailto:desimckenzie%40yahoo.com> yahoo.com

Date: Thu, 14 Jan 2010 09:49:27 -0800

Subject: Re: Variability in DS true variability, toxic overload,

or both?

I believe Dr. Capone was speaking of the Post Traumatic Stress related

to multiple

procedures, stays in the hospital etc (which are common in children with

Down Syndrome

because of the many health problems most children with DS have)...and how

this could

be a trigger...I need to review his talks again...

He also spoke of a new research project they have started on boys with Down

Syndrome/Autism...

boy do I have to get Aubrey to Kennedy Krieger...I wish money grew on

trees...

desi

________________________________

From: Sara Cohen <pastmidvale@ <mailto:pastmidvale%40gmail.com> gmail.com>

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Sent: Thu, January 14, 2010 6:30:01 AM

Subject: Re: Variability in DS true variability, toxic overload,

or both?

So if susrgery could be implicated - then I wonder if it is not the surgery,

but the ANESTHESIA>? ?

Where are all the research docs when we need them????

On Thu, Jan 14, 2010 at 3:45 AM, Desi McKenzie <desimckenzie@

yahoo.com>wrote:

>

>

> I don't think you're nuts at all. I'll bet that if we all paid very close

> attention and found a common thread outside of the suppressed immune

system

> we could offer more to point to the cause of autism than one would think.

>

> I have my own " crazy " hypothesis. Aubrey, 11, dstr21, pddnos, hearing

> impaired had TWO ear surgeries (tympanomastoidecto mies) in the space of 3

> months during her 9th year. She had horrible ear infections that developed

> into Pseudomonas infections in both ears most probably because of her low

> tone which caused lax tubing and fluid just sat there...We lived in the

ENT

> office for the first 8 years or so of her life...ENT had to slit behind

each

> of her ears and go in to clean out the infection supposedly before it

spread

> to her brain...

>

> ly I think this infection probably did spread to her brain

> regardless because very shortly after the second ear surgery she started

> showing the signs of autism...It should also be mentioned that Dr. Capone

> cited multiple surgeries, hospitalizations and the resulting PTSD as

another

> possible trigger when I heard him speak at the NDSC Conference last

> August...

>

> Hmmm? Nice to be able to share without being laughed at!

>

> Desi

> Mililani, Hi

>

> ____________ _________ _________ __

> From: " leos02sbcglobal (DOT) net <leos02%40sbcglobal .net> " <

> leos02sbcglobal (DOT) net <leos02%40sbcglobal .net>>

> To: @yahoogrou ps.com <%40yahoog roups.com>

> Sent: Wed, January 13, 2010 4:54:16 PM

> Subject: Variability in DS true variability, toxic overload,

or

> both?

>

>

> After getting Mina diagnosed with ASD, I started to wonder if the

> variability in DS is true variability or maybe something along the

spectrum

> because of suppressed immune function in DS. I mean, I know that there are

> metabolic problems possibly because of the third chromosome, but I also

> wonder if much of what we attribute to that or low tone, whatever, is

really

> toxic overload that just hasn't gotten to full blown autism. Maybe that

> would explain why some children with DS don't seem to stim much or

anything

> and others are just crazy stimmers, obsessors, things like that. Anyone

> wonder the same thing, or am I just nuts?! Well, don't answer that, lol!

>

>

[Guest guest]

I believe that she does run a Ds clinic, but we do not go on clinic days.

She is the one who diagnosed Logan while she was at a brief stint at

Rockford Children’s Hospital. She really takes her time and listens VERY

well. I would highly recommend her.

From: [mailto: ] On Behalf

Of Lori

Sent: Friday, January 15, 2010 2:32 PM

To:

Subject: RE: Variability in DS true variability, toxic overload,

or both?/Kennedy Krieger Experience

Does she run a Down syndrome clinic at St. ius? Does she advertise

herself as a behavioral pediatrician? Isaac can use his insurance in

Illinois since that is where he was born. Do you think she has insights

that are helpful?

So you are in the western suburbs? We left the Chicago area after 20 years

for Madison.

Lori

_____

From: <mailto:%40yahoogroups.com>

[mailto: <mailto:%40yahoogroups.com> ] On

Behalf

Of L. Davenport

Sent: Friday, January 15, 2010 2:27 PM

To: <mailto:%40yahoogroups.com>

Subject: RE: Variability in DS true variability, toxic overload,

or both?/Kennedy Krieger Experience

That was me! Dr. Keck left Lutheran General several years ago and is now

out at St. ius in Hoffman Estates, IL. She runs a summer respite camp

and is very active in our local Ds support group. She was instrumental in

getting a group started in our area called Down syndrome Plus. It is

totally organized and run by the head of the local Ds group including food

and child care after Dr. Keck stressed that those of us in the “plus” group

are already too overwhelmed with our daily lives to work on something else.

J We only meet quarterly, which really helps, too.

From: @yahoogrou <mailto:%40yahoogroups.com> ps.com

[mailto:@yahoogrou <mailto:%40yahoogroups.com> ps.com] On

Behalf

Of Lori

Sent: Friday, January 15, 2010 9:09 AM

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Subject: RE: Variability in DS true variability, toxic overload,

or both?/Kennedy Krieger Experience

Who was it that started a post with “Dr. Keck?” I remembered taking Isaac

to her when he was six months old for an evaluation. When I saw her name I

looked her up. She runs a quarterly support group for parents who have

children with a DS/ASD diagnosis. She is the Midwest expert on Down

syndrome and autism? She might not agree to that but Google her. I don’t

know if she is doing research but research is always ten years behind

practice. She sure had a lot of common sense when I met her twelve and a

half years ago. I was thinking of taking both boys to her. She had an

office Advocate Lutheran Children’s Hospital/Center in Park Ridge, IL when

we saw her. This is the best facility we have visited for kids. I really

liked her the one time I met her. Maybe someone will have more up-to-date

info.

I also liked the guy from Kennedy Krieger when I met him but he had

absolutely nothing to offer. If someone goes to Kennedy looking for a

“plan” for their child or an answer to the quirkiness, I don’t know if he

can do that.

I always go back to what Sara says about finding good people to write

behavior plans. I have a call into someone right now hoping we can figure

out how to help Isaac “go with the flow” better.

Lori

_____

From: @yahoogrou <mailto:%40yahoogroups.com> ps.com

<mailto:%40yahoogroups.com>

[mailto:@yahoogrou <mailto:%40yahoogroups.com> ps.com

<mailto:%40yahoogroups.com> ] On

Behalf

Of Desi McKenzie

Sent: Friday, January 15, 2010 2:43 AM

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

<mailto:%40yahoogroups.com>

Subject: Re: Variability in DS true variability, toxic overload,

or both?/Kennedy Krieger Experience

Whoa! Holly, Others...

Could you please weigh in here? This recent post about such a negative

experience at Kennedy Krieger is making me extremely anxious. I met Dr.

Capone last year and since then have been trying to find a way to have my

daughter,

Aubrey, (11, dstr21, pddnos, and hearing impaired) evaluated by his team. It

will take a lot of money to get her to Baltimore, land from Hawai'i and

this was a extremely discouraging post. Talk about stripping a parent of

hope. AUWE!

We don't have DS/Autism " specialists " growing in trees here in Hawai'i and

most that we've seen are so ill-equipped to

provide appropriate supports. If the Kennedy Krieger Institute isn't the

place to go where the heck else does one take their child for an evaluation

and recommendations?

" Lost " in Hawai'i and I'm not referring to the drama series filmed here in

Haleiwa!

Mahalo for any restoration of hope!

Desi

Mililani, hi

________________________________

From: Anne Haroun <tabuhlilive (DOT) <mailto:tabuhli%40live.com> com>

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Sent: Thu, January 14, 2010 1:56:30 PM

Subject: RE: Variability in DS true variability, toxic overload,

or both?

Um, well I may get kicked off this list before I even start...I live not too

far from Kennedy K. ...as far as the clinic for DS/autism, well, it has

been a waste of time for us....I cannot make definite judgments about

people's character or motive in how they practice, but I went with my

insurance paying a heap for the visit only to find that my needs and

concerns were all being steered toward one goal...trying to find a reason to

prescribe risperadol to my son....oh, only a " low dose " of this anti

psychotic drug (that can grow breasts on boys.)

My husband who is a physician is adamantly against this as am I for any

child to be experimented on at this point with this drug....we did not see,

after viewing the papers presented to us about the use of this drug for

DS/autism, any justification. I went hoping to find if other children had

the same severe lack of growth as Wesley did and also with questions about

other aspects of his development that baffle us...I did not feel any of

these things were really listened to.....the drug was prescribed and I was

given before and after papers to fill out ...this was a research visit, not

a doctor's visit and I guess I should have put up a fuss about being billed

for it.....

this is wrong medical practice and not only that, my son is on Prozac and

also had a heart condition that was yet unrepaired and this drug should not

have been given to a child with Wesley's complicated health problems....I do

not consider that particular place the " DS-Autism specialists " ...yes they

do research and I do hope good comes from some of their research for our

children's sakes.... the world of DS autism has no experts that truly know

what to tell parents.....at least I have not found any...I personally have

received more help from the parents on lists like this...

I am not mentioning any doctors' names and if he looks here, well he is a

nice friendly guy....but I just do not agree with how he proceeds with his

medical practice...

also my hats off to anyone who takes your child for research studies....I

cannot take my son...I cannot waste a day of his life against his choice and

I know if he understood the choice, no way would he want to go.....he has

enough doc visits surgeries interventions...I cannot add that to his

plate....but I do admire people who can find the energy and time to do

that!! Wesley will not eat the free lunch they offer and my thighs do not

need it....

Annie

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

From: desimckenzie@ <mailto:desimckenzie%40yahoo.com> yahoo.com

Date: Thu, 14 Jan 2010 09:49:27 -0800

Subject: Re: Variability in DS true variability, toxic overload,

or both?

I believe Dr. Capone was speaking of the Post Traumatic Stress related

to multiple

procedures, stays in the hospital etc (which are common in children with

Down Syndrome

because of the many health problems most children with DS have)...and how

this could

be a trigger...I need to review his talks again...

He also spoke of a new research project they have started on boys with Down

Syndrome/Autism...

boy do I have to get Aubrey to Kennedy Krieger...I wish money grew on

trees...

desi

________________________________

From: Sara Cohen <pastmidvale@ <mailto:pastmidvale%40gmail.com> gmail.com>

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Sent: Thu, January 14, 2010 6:30:01 AM

Subject: Re: Variability in DS true variability, toxic overload,

or both?

So if susrgery could be implicated - then I wonder if it is not the surgery,

but the ANESTHESIA>? ?

Where are all the research docs when we need them????

On Thu, Jan 14, 2010 at 3:45 AM, Desi McKenzie <desimckenzie@

yahoo.com>wrote:

>

>

> I don't think you're nuts at all. I'll bet that if we all paid very close

> attention and found a common thread outside of the suppressed immune

system

> we could offer more to point to the cause of autism than one would think.

>

> I have my own " crazy " hypothesis. Aubrey, 11, dstr21, pddnos, hearing

> impaired had TWO ear surgeries (tympanomastoidecto mies) in the space of 3

> months during her 9th year. She had horrible ear infections that developed

> into Pseudomonas infections in both ears most probably because of her low

> tone which caused lax tubing and fluid just sat there...We lived in the

ENT

> office for the first 8 years or so of her life...ENT had to slit behind

each

> of her ears and go in to clean out the infection supposedly before it

spread

> to her brain...

>

> ly I think this infection probably did spread to her brain

> regardless because very shortly after the second ear surgery she started

> showing the signs of autism...It should also be mentioned that Dr. Capone

> cited multiple surgeries, hospitalizations and the resulting PTSD as

another

> possible trigger when I heard him speak at the NDSC Conference last

> August...

>

> Hmmm? Nice to be able to share without being laughed at!

>

> Desi

> Mililani, Hi

>

> ____________ _________ _________ __

> From: " leos02sbcglobal (DOT) net <leos02%40sbcglobal .net> " <

> leos02sbcglobal (DOT) net <leos02%40sbcglobal .net>>

> To: @yahoogrou ps.com <%40yahoog roups.com>

> Sent: Wed, January 13, 2010 4:54:16 PM

> Subject: Variability in DS true variability, toxic overload,

or

> both?

>

>

> After getting Mina diagnosed with ASD, I started to wonder if the

> variability in DS is true variability or maybe something along the

spectrum

> because of suppressed immune function in DS. I mean, I know that there are

> metabolic problems possibly because of the third chromosome, but I also

> wonder if much of what we attribute to that or low tone, whatever, is

really

> toxic overload that just hasn't gotten to full blown autism. Maybe that

> would explain why some children with DS don't seem to stim much or

anything

> and others are just crazy stimmers, obsessors, things like that. Anyone

> wonder the same thing, or am I just nuts?! Well, don't answer that, lol!

>

>

[Guest guest]

Please don't be discouraged. I live in Chicago, and we don't have any

DS/Autism specialists here as far as I know. I've never seen Dr. Capone, and I

don't feel a need to. We are going to go the route of biomed ourselves and see

what happens. I think it'll be important to keep abreast of all research that

goes on and I would really try some biomedical approaches to your daughter to

make her body work the best it can. I think that will help a lot. I mean,

maybe it would be good to be able to see Dr. Capone, but PLEASE don't ever lose

hope, no matter what happens! Hugs to you...keep your chin up!

>

>

>

> >

>

> >

>

> > I don't think you're nuts at all. I'll bet that if we all paid very close

>

> > attention and found a common thread outside of the suppressed immune system

>

> > we could offer more to point to the cause of autism than one would think.

>

> >

>

> > I have my own " crazy " hypothesis. Aubrey, 11, dstr21, pddnos, hearing

>

> > impaired had TWO ear surgeries (tympanomastoidecto mies) in the space of 3

>

> > months during her 9th year. She had horrible ear infections that developed

>

> > into Pseudomonas infections in both ears most probably because of her low

>

> > tone which caused lax tubing and fluid just sat there...We lived in the ENT

>

> > office for the first 8 years or so of her life...ENT had to slit behind each

>

> > of her ears and go in to clean out the infection supposedly before it spread

>

> > to her brain...

>

> >

>

> > ly I think this infection probably did spread to her brain

>

> > regardless because very shortly after the second ear surgery she started

>

> > showing the signs of autism...It should also be mentioned that Dr. Capone

>

> > cited multiple surgeries, hospitalizations and the resulting PTSD as another

>

> > possible trigger when I heard him speak at the NDSC Conference last

>

> > August...

>

> >

>

> > Hmmm? Nice to be able to share without being laughed at!

>

> >

>

> > Desi

>

> > Mililani, Hi

>

> >

>

> > ____________ _________ _________ __

>

> > From: " leos02sbcglobal (DOT) net <leos02%40sbcglobal .net> " <

>

> > leos02sbcglobal (DOT) net <leos02%40sbcglobal .net>>

>

> > To: @yahoogrou ps.com <%40yahoog roups.com>

>

> > Sent: Wed, January 13, 2010 4:54:16 PM

>

> > Subject: Variability in DS true variability, toxic overload, or

>

> > both?

>

> >

>

> >

>

> > After getting Mina diagnosed with ASD, I started to wonder if the

>

> > variability in DS is true variability or maybe something along the spectrum

>

> > because of suppressed immune function in DS. I mean, I know that there are

>

> > metabolic problems possibly because of the third chromosome, but I also

>

> > wonder if much of what we attribute to that or low tone, whatever, is really

>

> > toxic overload that just hasn't gotten to full blown autism. Maybe that

>

> > would explain why some children with DS don't seem to stim much or anything

>

> > and others are just crazy stimmers, obsessors, things like that. Anyone

>

> > wonder the same thing, or am I just nuts?! Well, don't answer that, lol!

>

> >

>

> >

[Guest guest]

Where in the Chicago area are you? I am in Hanover Park. Have you ever

taken your child to see Dr. Keck?

From: [mailto: ] On Behalf

Of leos02@...

Sent: Friday, January 15, 2010 8:04 PM

To:

Subject: Re: Variability in DS true variability, toxic overload,

or both?/Kennedy Krieger Experience

Please don't be discouraged. I live in Chicago, and we don't have any

DS/Autism specialists here as far as I know. I've never seen Dr. Capone, and

I don't feel a need to. We are going to go the route of biomed ourselves and

see what happens. I think it'll be important to keep abreast of all research

that goes on and I would really try some biomedical approaches to your

daughter to make her body work the best it can. I think that will help a

lot. I mean, maybe it would be good to be able to see Dr. Capone, but PLEASE

don't ever lose hope, no matter what happens! Hugs to you...keep your chin

up!

>

>

>

> >

>

> >

>

> > I don't think you're nuts at all. I'll bet that if we all paid very

close

>

> > attention and found a common thread outside of the suppressed immune

system

>

> > we could offer more to point to the cause of autism than one would

think.

>

> >

>

> > I have my own " crazy " hypothesis. Aubrey, 11, dstr21, pddnos, hearing

>

> > impaired had TWO ear surgeries (tympanomastoidecto mies) in the space of

3

>

> > months during her 9th year. She had horrible ear infections that

developed

>

> > into Pseudomonas infections in both ears most probably because of her

low

>

> > tone which caused lax tubing and fluid just sat there...We lived in the

ENT

>

> > office for the first 8 years or so of her life...ENT had to slit behind

each

>

> > of her ears and go in to clean out the infection supposedly before it

spread

>

> > to her brain...

>

> >

>

> > ly I think this infection probably did spread to her brain

>

> > regardless because very shortly after the second ear surgery she started

>

> > showing the signs of autism...It should also be mentioned that Dr.

Capone

>

> > cited multiple surgeries, hospitalizations and the resulting PTSD as

another

>

> > possible trigger when I heard him speak at the NDSC Conference last

>

> > August...

>

> >

>

> > Hmmm? Nice to be able to share without being laughed at!

>

> >

>

> > Desi

>

> > Mililani, Hi

>

> >

>

> > ____________ _________ _________ __

>

> > From: " leos02sbcglobal (DOT) net <leos02%40sbcglobal .net> " <

>

> > leos02sbcglobal (DOT) net <leos02%40sbcglobal .net>>

>

> > To: @yahoogrou ps.com <%40yahoog roups.com>

>

> > Sent: Wed, January 13, 2010 4:54:16 PM

>

> > Subject: Variability in DS true variability, toxic overload,

or

>

> > both?

>

> >

>

> >

>

> > After getting Mina diagnosed with ASD, I started to wonder if the

>

> > variability in DS is true variability or maybe something along the

spectrum

>

> > because of suppressed immune function in DS. I mean, I know that there

are

>

> > metabolic problems possibly because of the third chromosome, but I also

>

> > wonder if much of what we attribute to that or low tone, whatever, is

really

>

> > toxic overload that just hasn't gotten to full blown autism. Maybe that

>

> > would explain why some children with DS don't seem to stim much or

anything

>

> > and others are just crazy stimmers, obsessors, things like that. Anyone

>

> > wonder the same thing, or am I just nuts?! Well, don't answer that, lol!

>

> >

>

> >

[Guest guest]

Are you planning on attending the Autism One conference?

Have you attended?

Irma

On Fri, Jan 15, 2010 at 6:03 PM, leos02@...

wrote:

>

>

> Please don't be discouraged. I live in Chicago, and we don't have any

> DS/Autism specialists here as far as I know. I've never seen Dr. Capone, and

> I don't feel a need to. We are going to go the route of biomed ourselves and

> see what happens. I think it'll be important to keep abreast of all research

> that goes on and I would really try some biomedical approaches to your

> daughter to make her body work the best it can. I think that will help a

> lot. I mean, maybe it would be good to be able to see Dr. Capone, but PLEASE

> don't ever lose hope, no matter what happens! Hugs to you...keep your chin

> up!

>

>

[Guest guest]

Ah, Hangover Park, eh?!!! lol!~ Sorry, couldn't resist. That's what we always

called it way back then. Um I am in Villa Park, and I haven't seen Dr. Keck

though I have heard of her. I have also heard about the DS Plus group, but with

Evangelina my youngest, I am not available in the evenings (Evangelina is really

high needs, as if DS ASD wasn't enough, lol!) I am wondering what she would

even bring to the table. I have read about DS ASD from Kennedy Krieger and am

going to be adding ABA to the schedule. Is there anything that she would do

other than maybe prescribe drugs and say that this is not in my mind? I am kind

of leary about placing much hope in these " experts. "

> >

> >

> >

> > >

> >

> > >

> >

> > > I don't think you're nuts at all. I'll bet that if we all paid very

> close

> >

> > > attention and found a common thread outside of the suppressed immune

> system

> >

> > > we could offer more to point to the cause of autism than one would

> think.

> >

> > >

> >

> > > I have my own " crazy " hypothesis. Aubrey, 11, dstr21, pddnos, hearing

> >

> > > impaired had TWO ear surgeries (tympanomastoidecto mies) in the space of

> 3

> >

> > > months during her 9th year. She had horrible ear infections that

> developed

> >

> > > into Pseudomonas infections in both ears most probably because of her

> low

> >

> > > tone which caused lax tubing and fluid just sat there...We lived in the

> ENT

> >

> > > office for the first 8 years or so of her life...ENT had to slit behind

> each

> >

> > > of her ears and go in to clean out the infection supposedly before it

> spread

> >

> > > to her brain...

> >

> > >

> >

> > > ly I think this infection probably did spread to her brain

> >

> > > regardless because very shortly after the second ear surgery she started

> >

> > > showing the signs of autism...It should also be mentioned that Dr.

> Capone

> >

> > > cited multiple surgeries, hospitalizations and the resulting PTSD as

> another

> >

> > > possible trigger when I heard him speak at the NDSC Conference last

> >

> > > August...

> >

> > >

> >

> > > Hmmm? Nice to be able to share without being laughed at!

> >

> > >

> >

> > > Desi

> >

> > > Mililani, Hi

> >

> > >

> >

> > > ____________ _________ _________ __

> >

> > > From: " leos02sbcglobal (DOT) net <leos02%40sbcglobal .net> " <

> >

> > > leos02sbcglobal (DOT) net <leos02%40sbcglobal .net>>

> >

> > > To: @yahoogrou ps.com <%40yahoog roups.com>

> >

> > > Sent: Wed, January 13, 2010 4:54:16 PM

> >

> > > Subject: Variability in DS true variability, toxic overload,

> or

> >

> > > both?

> >

> > >

> >

> > >

> >

> > > After getting Mina diagnosed with ASD, I started to wonder if the

> >

> > > variability in DS is true variability or maybe something along the

> spectrum

> >

> > > because of suppressed immune function in DS. I mean, I know that there

> are

> >

> > > metabolic problems possibly because of the third chromosome, but I also

> >

> > > wonder if much of what we attribute to that or low tone, whatever, is

> really

> >

> > > toxic overload that just hasn't gotten to full blown autism. Maybe that

> >

> > > would explain why some children with DS don't seem to stim much or

> anything

> >

> > > and others are just crazy stimmers, obsessors, things like that. Anyone

> >

> > > wonder the same thing, or am I just nuts?! Well, don't answer that, lol!

> >

> > >

> >

> > >

[Guest guest]

I have never attended, but I would love to go. Don't know if we can afford it

or not. Plus, I'd need someone to watch the kiddos for a while. Where is it

this year?

>

> >

> >

> > Please don't be discouraged. I live in Chicago, and we don't have any

> > DS/Autism specialists here as far as I know. I've never seen Dr. Capone, and

> > I don't feel a need to. We are going to go the route of biomed ourselves and

> > see what happens. I think it'll be important to keep abreast of all research

> > that goes on and I would really try some biomedical approaches to your

> > daughter to make her body work the best it can. I think that will help a

> > lot. I mean, maybe it would be good to be able to see Dr. Capone, but PLEASE

> > don't ever lose hope, no matter what happens! Hugs to you...keep your chin

> > up!

> >

> >

>

>

>

[Guest guest]

It is held like at the Rosemont, not too far from the Chicago O-Hare

airport. Usually held at the Westin Hotel. My husband, & I usually

attend when we can.

My DH makes it a mini-vacation as he is from Southbend, IN to visit his

family or we also scope out those wonderful restaurants that serve GF/CF

authentic food items. We have also had the most pleasure of also visiting

Louise who is one of our DS/ASD members.

This conference has always been a blessing all under one roof which I liked

very much.

If I am able to get a stipend look forward attending it if there is no

interference with my son's school as he will graduate this year.

The most exciting news though is the fact has been making numerous of new

friends who are now on this road who also look forward attending. It use to

be just me but now we have grown who travels this journey within the

biomedical intervention path which is not to know not alone anymore. Glad

many are posting here as well as this revolves around the dual dx's of

DS & AU.

Even if you are unable to make it out to the conference, you could download

past PowerPoint presentations or should make it out but unable to attend the

sessions, it would also be great to scope out the Exhibitors too.

http://www.autismone.org/content/autism-one-generation-rescue-2010-conference-ma\

y-24-30-chicago-illinois

Irma,21,DS/ASD

Autism One / Generation Rescue 2010 Conference, May 24-30, Chicago, Illinois

http://www.autismone.org/content/autism-one-generation-rescue-2010-conference-ma\

y-24-30-chicago-illinois

**

On Mon, Jan 18, 2010 at 4:00 PM, leos02@...

wrote:

>

>

> I have never attended, but I would love to go. Don't know if we can afford

> it or not. Plus, I'd need someone to watch the kiddos for a while. Where is

> it this year?

>

>

>

>

> >

> > >

> > >

> > > Please don't be discouraged. I live in Chicago, and we don't have any

> > > DS/Autism specialists here as far as I know. I've never seen Dr.

> Capone, and

> > > I don't feel a need to. We are going to go the route of biomed

> ourselves and

> > > see what happens. I think it'll be important to keep abreast of all

> research

> > > that goes on and I would really try some biomedical approaches to your

> > > daughter to make her body work the best it can. I think that will help

> a

> > > lot. I mean, maybe it would be good to be able to see Dr. Capone, but

> PLEASE

> > > don't ever lose hope, no matter what happens! Hugs to you...keep your

> chin

> > > up!

> > >

> > >

> >

> >

> >