Re: Re: biomedical treatments

January 4, 2008

Thank you Irma,

We live in Calgary, Alberta Canada. I have not attended a DAN conference yet as

I am just looking into the biomed treatments. I am finding there are many paths

to follow when it comes even to this form of treatment. For instance, the first

doctor I found was not covered at all under our health care. Within the first

few months of appointments and labs, the bill was going to be $10,000. The very

next day I found another doctor whose visits are covered as well as some of the

testing. Crazy!

I have 2 books at the moment: Children with Starving Brains- Jaquelyn

McCandless, Changing the Course of Autism- Jepson. Hopefully this is a

good start.

It sounds like a fair number of kids here are on some form of Biomedical

treatment. I would be curious to know who follows the caisen and gluten free

diet. I'm about ready to try anything to get the dirrhea under control.

How many years has your son been receiving these forms of treatment?

Thanks for the comments.

Dana

Re: biomedical treatments

>

> Hello,

>

> I am simply gathering information on biomedical treatment for kids

with Down syndrome and Autism. We are considering this for our son

who is 11. Do any of you treat your children with vitamins and

minerals, injections, etc. If so have you noticed a difference?

>

> Dana

Hi Dana,

Due to my son's underlying medical issues when all general medical

treatments failed and most doc's were unable to figure out what was

going on with a batter of test, all would return normal.

He suffered tremendously from recurrent infection on a monthly basis.

Even I was confused & worried big times if the medical team whom he

was seen by were unable to find a treatment. What next?

So the question my friends had always asked me was " What would you do

to try to save your child? " , as I had to turn down alot of invitations

because my son was always sick & thensome and they felt sorry for me

and sad for my son as they would see how sick he was.

Even the school nurse would call me alot and were surprise with the

doctor's outcome of not detecting anything.

I had begun just to eliminate certain food items and then finally

found a wonderful Hematologist who detected that my son suffered from

multiple food allergies/food intolerances, & CVID (Common Variable

Immunodeficiency) .

He was the closest to a DAN doc around where I live, does not claim to

be but I actually found someone who was willing to run some test as I

have been learning the ropes of attending numerous DAN conferences

before taking this route.

I did manage to find one doc whom claim to be a DAN, but it did more

harm than good.

So I enter with caution nowadays and try to work around several

medical professionals who at least would not mind doing some test

needed where our health insurance or my son's Medicaid would help pay

for it as many revolve around money upfront.

In April 2007 was the beginning of entering the Alternative Bio-med

route. Which has helped my son tremendously.

It is personalized according to his health needs.

This is the place I take my son to and they accept our health insurance.

http://www.mycarecl inics.com/

I was hesitant at first and just when I was about to quit this

treatment, my son was once again showing awareness, so this was a

biggie to observe this.

I know what worked for my son, may not work for others.

I have not taken my son these past months for his IV Chelation, Ozone

& Pk treatments, due to regular check-ups which involved being sedated

and I will soon return some time this month to begin the

detoxification once again.

Whereabouts do you live?

Have you attended any DAN conferences?

Read any books in regards to this road?

Have you read the latest on the Autismlink?

They had compiled most of the information-

TACA is proud to announce our fabulous new DIET website to help

families using dietary interventions.

http://gfcf- diet.talkaboutcu ringautism. org/index. html

Here is to 2008 for some Hope where we all learn for our individuals

with unique challenging needs with whatever trials & errors treatmetns

as we continue our path.

Irma,19, DS/ASD

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

January 4, 2008

Dana,

My son Jake will be 9 in april. We started him on risperdal this last March and

in the past 6 months have been gluten free. He is already pretty dairy free

except for the occasional milk product. Mostly he is on soy products. The

changes this past 12 months have been many. He is much more focused, talks

more, asks for help, can tell me what he wants or at least get me in he right

direction and he has fewer outburst because he is getting more of his needs met.

He still has down days and when he does get some gluten, it seems to affect him

the following day.

The diet has not been as hard as I thought it would be, just expensive. Our

entire family had to change or I could not have done it. Our 10 year old

daughter doesn't follow it outside of the house but my husband and I really try

our best. My husband has noticed big differences in himself which is helpful

because he can actually communicate things!

Tonight Jake was not feeling very well. After dinner I went to put him to bed

and he kept saying Ernie, Ernie. I asked him to go look for the Ernie he

wanted. He couldn't find it. So, I take all of his Ernie's, This one?

No...This one? NO. Then he goes towards his closet which has his sheets and

all on a top shelf. I tries to climb up on a toy box. so I pick him up and he

starts rummaging through his sheets. It finally dawns on me that he is looking

for his Ernie pillowcase because I had changed his sheets. I found the

pillowcase...he jumped up and down and said yes. He was happy and went right to

sleep.

He does love his Ernies!

Holly

Re: biomedical treatments

>

> Hello,

>

> I am simply gathering information on biomedical treatment for kids

with Down syndrome and Autism. We are considering this for our son

who is 11. Do any of you treat your children with vitamins and

minerals, injections, etc. If so have you noticed a difference?

>

> Dana

Hi Dana,

Due to my son's underlying medical issues when all general medical

treatments failed and most doc's were unable to figure out what was

going on with a batter of test, all would return normal.

He suffered tremendously from recurrent infection on a monthly basis.

Even I was confused & worried big times if the medical team whom he

was seen by were unable to find a treatment. What next?

So the question my friends had always asked me was " What would you do

to try to save your child? " , as I had to turn down alot of invitations

because my son was always sick & thensome and they felt sorry for me

and sad for my son as they would see how sick he was.

Even the school nurse would call me alot and were surprise with the

doctor's outcome of not detecting anything.

I had begun just to eliminate certain food items and then finally

found a wonderful Hematologist who detected that my son suffered from

multiple food allergies/food intolerances, & CVID (Common Variable

Immunodeficiency) .

He was the closest to a DAN doc around where I live, does not claim to

be but I actually found someone who was willing to run some test as I

have been learning the ropes of attending numerous DAN conferences

before taking this route.

I did manage to find one doc whom claim to be a DAN, but it did more

harm than good.

So I enter with caution nowadays and try to work around several

medical professionals who at least would not mind doing some test

needed where our health insurance or my son's Medicaid would help pay

for it as many revolve around money upfront.

In April 2007 was the beginning of entering the Alternative Bio-med

route. Which has helped my son tremendously.

It is personalized according to his health needs.

This is the place I take my son to and they accept our health insurance.

http://www.mycarecl inics.com/

I was hesitant at first and just when I was about to quit this

treatment, my son was once again showing awareness, so this was a

biggie to observe this.

I know what worked for my son, may not work for others.

I have not taken my son these past months for his IV Chelation, Ozone

& Pk treatments, due to regular check-ups which involved being sedated

and I will soon return some time this month to begin the

detoxification once again.

Whereabouts do you live?

Have you attended any DAN conferences?

Read any books in regards to this road?

Have you read the latest on the Autismlink?

They had compiled most of the information-

TACA is proud to announce our fabulous new DIET website to help

families using dietary interventions.

http://gfcf- diet.talkaboutcu ringautism. org/index. html

Here is to 2008 for some Hope where we all learn for our individuals

with unique challenging needs with whatever trials & errors treatmetns

as we continue our path.

Irma,19, DS/ASD

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

January 4, 2008

Holly,

Thats great Jake could communicate this to you. I feel so sorry for our kids

sometimes as they know what they want, but can't communicate it. No wonder they

get so frustrated at times.

I am starting to stock the shelves and read up on the GFCF diet. I don't think

it will be too bad. I'm a little worried about bread and bun though because

loves his bread. He may protest if its not the real thing!

Dana

Re: biomedical treatments

>

> Hello,

>

> I am simply gathering information on biomedical treatment for kids

with Down syndrome and Autism. We are considering this for our son

who is 11. Do any of you treat your children with vitamins and

minerals, injections, etc. If so have you noticed a difference?

>

> Dana

Hi Dana,

Due to my son's underlying medical issues when all general medical

treatments failed and most doc's were unable to figure out what was

going on with a batter of test, all would return normal.

He suffered tremendously from recurrent infection on a monthly basis.

Even I was confused & worried big times if the medical team whom he

was seen by were unable to find a treatment. What next?

So the question my friends had always asked me was " What would you do

to try to save your child? " , as I had to turn down alot of invitations

because my son was always sick & thensome and they felt sorry for me

and sad for my son as they would see how sick he was.

Even the school nurse would call me alot and were surprise with the

doctor's outcome of not detecting anything.

I had begun just to eliminate certain food items and then finally

found a wonderful Hematologist who detected that my son suffered from

multiple food allergies/food intolerances, & CVID (Common Variable

Immunodeficiency) .

He was the closest to a DAN doc around where I live, does not claim to

be but I actually found someone who was willing to run some test as I

have been learning the ropes of attending numerous DAN conferences

before taking this route.

I did manage to find one doc whom claim to be a DAN, but it did more

harm than good.

So I enter with caution nowadays and try to work around several

medical professionals who at least would not mind doing some test

needed where our health insurance or my son's Medicaid would help pay

for it as many revolve around money upfront.

In April 2007 was the beginning of entering the Alternative Bio-med

route. Which has helped my son tremendously.

It is personalized according to his health needs.

This is the place I take my son to and they accept our health insurance.

http://www.mycarecl inics.com/

I was hesitant at first and just when I was about to quit this

treatment, my son was once again showing awareness, so this was a

biggie to observe this.

I know what worked for my son, may not work for others.

I have not taken my son these past months for his IV Chelation, Ozone

& Pk treatments, due to regular check-ups which involved being sedated

and I will soon return some time this month to begin the

detoxification once again.

Whereabouts do you live?

Have you attended any DAN conferences?

Read any books in regards to this road?

Have you read the latest on the Autismlink?

They had compiled most of the information-

TACA is proud to announce our fabulous new DIET website to help

families using dietary interventions.

http://gfcf- diet.talkaboutcu ringautism. org/index. html

Here is to 2008 for some Hope where we all learn for our individuals

with unique challenging needs with whatever trials & errors treatmetns

as we continue our path.

Irma,19, DS/ASD

____________ _________ _________ _________ _________ _________ _

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/

;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

January 4, 2008

<<would be curious to know who follows the caisen and gluten free diet. I'm

about ready to try anything to get the dirrhea under control.>>

Dana, we've been GF/CF for about 10 years, then on SCD ( pecanbread.com) for

almost 5 I think. Have you had any testing done for celiac? As you know it's

more common with DS kids and there are blood tests that can help determine

whether it may be a problem. The reason I ask is that once you go GF you cannot

have an endoscopy for celiac disease without being back on gluten for a few

months. If he does have celiac it will also give you extra initiative to stay on

the diet. Just a suggestion. Something to rule out at least as a cause for

diahrrea. Of course the treatment would be a GF diet but it might help you to

stick to it. I believe in the diet with or without celiac, more as a treatment

for autism but that's just me (and a few others).

Sherry

January 4, 2008

Welcome to the group. I was at my wits end with the diarrhea too. The first

blood test had skewed levels. The dr did another blood test, very expensive, to

see if he had the genetic marker for celiac. He did not. The dr explained if you

have the marker you could have celiac but if you do not have the marker you

cannot have celiac and never can. I had played the elimination game to long so

he had an endoscopy. The enzyme testing came back as lactose intolerant. We are

strictly following the dairy free diet and life is without diarrhea, yeah.

Charlyne

Mom to Zeb 15 DS/OCD/ASD?

gldcst wrote: <<would be

curious to know who follows the caisen and gluten free diet. I'm about ready to

try anything to get the dirrhea under control.>>