Re: been gfcfsf for 3 1/2 years

[Guest guest]

Speech is my ASD son's primary issue, here is what helped him (other

than GF/CF diet since you are already doing that):

-Mito cocktail per Dana's website.

-Omega 3s, but this helped more once we added mito cocktail.

-treating yeast.

-the biggest thing BY FAR has been anti-virals. My ds has HHV-6 in

his brain, which can cause suppression of speech. The incredible

explosion of language since beginning anti-virals about 6 weeks ago

(we've tried virastop, vlatrex, vit C and now lysine) has been

phenomenal. His speech path has literally been speechless at times

and is now really into biomed.

As for OCD stuff, the big things seem to be strep?PANDAS (and maybe

other bacteria?) and high blood histamine levels (quite possibly

related to or caused somehow by the bacteria?). You can check both of

these with blood tests. You can also look for viruses that way. It's

not fun to do, but it has been pivotal for my son.

Also, we are looking into Hyperbaric oxygen to help with speech. Many

of our kids have decreased blood flow in the brain, which leads to

speech delays among other things, and hyperbaric seems to help these

parts of the brain get more oxygen and function better. It's NOT

cheap though!

HTH,

-Sierra

>

> My son has been on the diet for 3 1/2 years with success, but lately

> he is having issues and I can't figure out what is going on so I would

> like to try a few things to see if it helps. He is just beginning to

> speak at 6 years old so I would like to see that area improved, what

> would improve speech development? My son has never had problems with

> bowel movements or anything even before the diet, but did have excema

> and behavior issues which were mostly resolved with the diet. He is

> beginning to have more behavior issues these days and is showing some

> OCD type behaviors, do you think we could see improvement in these

> areas with enzymes? If so which ones are most cost effective and work

> the best for these specific areas of concern? We used Houston

> peptizyde(sp?) when we were transferring to the gfcf diet and they

> helped with the transition, but did not work all on their own without

> the diet. We will never go back to cow milk, but it would be nice to

> be able to have a bit of gluten without total regression, is this

> possible with enzyme brands that are out there now? Have they changed

> much since we were on them 4 years ago, any new formulas?

>

[Guest guest]

thanks for your input but we have very little money and most of that would not

be covered by our insurance or medicaid. I have read that mito cocktail tends

to help most for kids that also have seizures and regression, my son does not

have those. Is what I read true from your perspective? So many things I would

like to try but all are expensive and out of reach, very frustrating. I will

probably start with enzymes and then omega 3s and move on slowly from there.

The diet is expensive enough on its own, but I am not willing to give it up

right now. We had an infraction a little while back and the reaction was

astounding.

-Undiagnosed Asperger's Syndrome

Stay at home mom to 3, Wife to

-6-6-02-Autism Spectrum, the light of my life

Katy-11-19-03-undiagnosed genetic syndrome that includes cleft palate-Pierre

Robin Sequence, scoliosis, heart defects, short stature, low muscle tone,

developmental delay, oral defensiveness, g tube fed part time-working on oral

feeding, slightly dysmorphic features, and my joy

J.D-no issues except he is totally in love with mommy, cutest baby in the world

visit my blog http://busiestmommyinamerica.blogspot.com

" If you think my hands are full, you should see my heart! "

________________________________

From: purpledragonmama05 <sierra.ansley@...>

Sent: Friday, December 12, 2008 2:19:26 PM

Subject: Re: been gfcfsf for 3 1/2 years

Speech is my ASD son's primary issue, here is what helped him (other

than GF/CF diet since you are already doing that):

-Mito cocktail per Dana's website.

-Omega 3s, but this helped more once we added mito cocktail.

-treating yeast.

-the biggest thing BY FAR has been anti-virals. My ds has HHV-6 in

his brain, which can cause suppression of speech. The incredible

explosion of language since beginning anti-virals about 6 weeks ago

(we've tried virastop, vlatrex, vit C and now lysine) has been

phenomenal. His speech path has literally been speechless at times

and is now really into biomed.

As for OCD stuff, the big things seem to be strep?PANDAS (and maybe

other bacteria?) and high blood histamine levels (quite possibly

related to or caused somehow by the bacteria?). You can check both of

these with blood tests. You can also look for viruses that way. It's

not fun to do, but it has been pivotal for my son.

Also, we are looking into Hyperbaric oxygen to help with speech. Many

of our kids have decreased blood flow in the brain, which leads to

speech delays among other things, and hyperbaric seems to help these

parts of the brain get more oxygen and function better. It's NOT

cheap though!

HTH,

-Sierra

[Guest guest]

>

> My son has been on the diet for 3 1/2 years with success, but lately

> he is having issues and I can't figure out what is going on so I would

> like to try a few things to see if it helps. He is just beginning to

> speak at 6 years old so I would like to see that area improved, what

> would improve speech development?

For my son, the most important supps for speech were anti-fungals

[biotin and GSE], anti-virals [vitamin A, vitamin C, lysine, OLE,

Virastop], and B1/B12/folic/carnitine.

> OCD type behaviors, do you think we could see improvement in these

> areas with enzymes?

It is possible, altho for my son, OCD was helped with the same supps

above that helped with language.

Dana

[Guest guest]

>

> thanks for your input but we have very little money and most of that

would not be covered by our insurance or medicaid. I have read that

mito cocktail tends to help most for kids that also have seizures and

regression, my son does not have those. Is what I read true from your

perspective?

Mito cocktail was required for my son to properly absorb fats. He did

not regress [Kanner child] and he did not have seizures. I wrote what

he needed here

http://www.danasview.net/mar05.htm

Dana

[Guest guest]

How did you know he wasn't absorbing fats properly? Mito cocktail is very

expensive and probably won't be covered under insurance unless I can prove it is

needed. What kind of dr could determine need and write a prescription?

-Undiagnosed Asperger's Syndrome

Stay at home mom to 3, Wife to

-6-6-02-Autism Spectrum, the light of my life

Katy-11-19-03-undiagnosed genetic syndrome that includes cleft palate-Pierre

Robin Sequence, scoliosis, heart defects, short stature, low muscle tone,

developmental delay, oral defensiveness, g tube fed part time-working on oral

feeding, slightly dysmorphic features, and my joy

J.D-no issues except he is totally in love with mommy, cutest baby in the world

visit my blog http://busiestmommyinamerica.blogspot.com

" If you think my hands are full, you should see my heart! "

________________________________

From: danasview

Subject: Re: been gfcfsf for 3 1/2 years

>

> thanks for your input but we have very little money and most of that

would not be covered by our insurance or medicaid. I have read that

mito cocktail tends to help most for kids that also have seizures and

regression, my son does not have those. Is what I read true from your

perspective?

Mito cocktail was required for my son to properly absorb fats. He did

not regress [Kanner child] and he did not have seizures. I wrote what

he needed here

http://www.danasvie w.net/mar05. htm

Dana

[Guest guest]

>

> How did you know he wasn't absorbing fats properly?

Any time he ate anything containing fat, he developed excessive ear

wax and he became very mean and aggressive.

>>Mito cocktail is very expensive and probably won't be covered under

insurance unless I can prove it is needed.

The carnitine and CoQ10 were rather expensive, yes. Carnitine was

wonderful for my son for more reasons than just mito issues, so

definitely worth it.

I don't know that supplements would be covered under insurance, even

*if* you had a diagnosis.

>>What kind of dr could determine need and write a prescription?

Some people have had mito issues tested by a DAN doctor. I just went

by observation of symptoms.

Dana

[Guest guest]

I've never heard of a Dr writing a prescription for supplements and

then having it covered by insurance, does this happen? If so I'd love

to learn more to see if I could get that done! Like Dana said about

her son, my son benefited so much from the cocktail that it is well

worth it. Other signs that people have mentioned of mito dysfunction

are low tone, poor articulation of speech, and compromised immunity.

-Sierra

> >

> > thanks for your input but we have very little money and most of that

> would not be covered by our insurance or medicaid. I have read that

> mito cocktail tends to help most for kids that also have seizures and

> regression, my son does not have those. Is what I read true from your

> perspective?

>

> Mito cocktail was required for my son to properly absorb fats. He did

> not regress [Kanner child] and he did not have seizures. I wrote what

> he needed here

>

> http://www.danasvie w.net/mar05. htm

>

> Dana

>

>

>

>

>

>

>

[Guest guest]

I have read that if the supplement is compounded like a drug that it can be

prescribed and covered, but I am not sure how to go about such a task. Well

worth it, I get that but when you can't pay the light bill it is NOT worth it,

KWIM?

-

________________________________

From: purpledragonmama05

I've never heard of a Dr writing a prescription for supplements and

then having it covered by insurance, does this happen? If so I'd love

to learn more to see if I could get that done! Like Dana said about

her son, my son benefited so much from the cocktail that it is well

worth it. Other signs that people have mentioned of mito dysfunction

are low tone, poor articulation of speech, and compromised immunity.

-Sierra

[Guest guest]

Oh by the way my son shows none of these signs mentioned.

-

________________________________

From: purpledragonmama05

Subject: Re: been gfcfsf for 3 1/2 years

Other signs that people have mentioned of mito dysfunction

are low tone, poor articulation of speech, and compromised immunity.

-Sierra

___

[Guest guest]

check with your ins. co. but it is definitely covered by MSA, and your federal

taxes. check your state also. hth, linda

Re: been gfcfsf for 3 1/2 years

I've never heard of a Dr writing a prescription for supplements and

then having it covered by insurance, does this happen? If so I'd love

to learn more to see if I could get that done! Like Dana said about

her son, my son benefited so much from the cocktail that it is well

worth it. Other signs that people have mentioned of mito dysfunction

are low tone, poor articulation of speech, and compromised immunity.

-Sierra

> >

> > thanks for your input but we have very little money and most of that

> would not be covered by our insurance or medicaid. I have read that

> mito cocktail tends to help most for kids that also have seizures and

> regression, my son does not have those. Is what I read true from your

> perspective?

>

> Mito cocktail was required for my son to properly absorb fats. He did

> not regress [Kanner child] and he did not have seizures. I wrote what

> he needed here

>

> http://www.danasvie<http://www.danasvie/> w.net/mar05. htm

>

> Dana

>

>

>

>

>

>

>