Question for Stan or anyone elsePLEASE?????HELP!

[Guest guest]

Stan,

This may be long. My son Jack is 11 Yrs old. He had a brain tumor

at 2 1/2 yrs old in his temporal lobe, left. I believe the tumor was

caused by a herpes virus. After brain surgery, he became normal

adding to his langauge. It was a miracle to have him back. This

lasted 5 weeks, then he got an ear infection and right before my eyes

lost eye contact and dropped all words the following two weeks. I

believe this deserved him a diagnosis of PITANDS and PANDAS kid. I am

not sure which Herpes virus caused the tumor but it must have been

herpes, because when I started Jack on acyclovir, he responded so

immediately and significantly with awareness and loss of right sided

weakness. Not knowing what we were doing, we stopped acyclovir and

lost the benefits, and when it was restarted the benefits were not as

great, but still good. At this point Jack was on a special diet,

gluten, casein, corn, and soy free. We were doing NAET, had already

done AIT therapy, he was in OT, PT and Speech. Jack was very apraxic

and dyspraxic, so we could not use sign. We started enzymes,

monolaurin, GSE, probiotics and other supplements,Biaxin for PANDAS

(we did not know it was PANDAS) and chelation at 4 and did every

other weekend for about three years. His last hair test showed high

Cadmium but I have not addressed that. At about 6- 7 we moved to

Valtrex and got more gains, at 8 seizures started and a year later he

had a staus episode when we were doing Virastop. I was up to 9

virastops. I am not sure if I caused the seizure with the virastop,

but he was okay, no regression when he woke up, and then we started

IVIG. We did an overnight EEG again and discovered a continuous

spike and wave. He had one at three and they said it was clear. He

has had about 9 IVIG treatments and responded well. His ASO titers

are almost normal now, but I still can not get him off of the

antibiotics. We have also done LDN with benefits, vitamin A therapy

with benefits, specific carbohydrate diet. We are now trying

modified atkins diet, We've done homeopathic remedies, uva ursi has

been beneficial, digestive enzymes are great. WE ran a dry blood

analysis and his pediatrician said it was the best one she ever got

back, just showing some lymphatic problems. I do believe he has

bacteria and yeast in the gut, but his stools look great. We also do

5htp and melatonin. Jack is still not verbal but he signs what he

wants, he is very playful, happy when not aggressive, a savant at

puzzles, and very emotionally intact. If I am upset, he hugs me and

lets me know he is concerned. I have triied many other things. I am

also now a behavior analyst. I when to school when his behaviors got

really bad. We got behaviors under control with diet, Lamictal for

the spikes in the frontal lobe, but my schooling has helped as well.

I want some opinions on what to do now. I have not done b-12, but I

have a prescription for it. His b-12 was high, but it probably was

because of the bacteria in the gut. I am at the moment trying

magnesium gluconate. I am not sure if he has low magnesium but I

found an article suggesting, he may be low, and magnesium gluconate

is suppose to be absorbed well. I also believe he may be a kid with

excessive glutamate. I really want try Namenda. He eats mostly meat.

I just wants some insight from someone that has a child that

responded so well to Valtrex. Is your son off Valtrex? What should

I do to try to wean him off Valtrex. Any ideas for bacteria? I also

have three other children and work. I can't look at all the posts.

I just need some other insight. Thanks for any advice.

nne

[Guest guest]

Tracey,

Thank you for your post. My son is on Valtrex. I was probably

one of the first to broadcast that there was a viral link. My son

has been on Valtrex since 2000. He has had many gains, but I am not

sure if I should try to wean him off of the Valtrex. I also believe

that there is bacteria involved, and I would like some opinions on

what works best for the bacteria. My son seems very typical in so

many ways but I feel that I may have caused some problems with all of

my interventions with diet and maybe chelation, or I am also

wondering if I am just missing something like, the glutamate problem.

Thanks,

nne

Stan,

>

> This may be long. My son Jack is 11 Yrs old. He had a brain tumor

> at 2 1/2 yrs old in his temporal lobe, left. I believe the tumor

was

> caused by a herpes virus. After brain surgery, he became normal

> adding to his langauge. It was a miracle to have him back. This

> lasted 5 weeks, then he got an ear infection and right before my

eyes

> lost eye contact and dropped all words the following two weeks. I

> believe this deserved him a diagnosis of PITANDS and PANDAS kid. I

am

> not sure which Herpes virus caused the tumor but it must have been

> herpes, because when I started Jack on acyclovir, he responded so

> immediately and significantly with awareness and loss of right

sided

> weakness. Not knowing what we were doing, we stopped acyclovir and

> lost the benefits, and when it was restarted the benefits were not

as

> great, but still good. At this point Jack was on a special diet,

> gluten, casein, corn, and soy free. We were doing NAET, had already

> done AIT therapy, he was in OT, PT and Speech. Jack was very

apraxic

> and dyspraxic, so we could not use sign. We started enzymes,

> monolaurin, GSE, probiotics and other supplements,Biaxin for PANDAS

> (we did not know it was PANDAS) and chelation at 4 and did every

> other weekend for about three years. His last hair test showed high

> Cadmium but I have not addressed that. At about 6- 7 we moved to

> Valtrex and got more gains, at 8 seizures started and a year later

he

> had a staus episode when we were doing Virastop. I was up to 9

> virastops. I am not sure if I caused the seizure with the virastop,

> but he was okay, no regression when he woke up, and then we started

> IVIG. We did an overnight EEG again and discovered a continuous

> spike and wave. He had one at three and they said it was clear. He

> has had about 9 IVIG treatments and responded well. His ASO titers

> are almost normal now, but I still can not get him off of the

> antibiotics. We have also done LDN with benefits, vitamin A therapy

> with benefits, specific carbohydrate diet. We are now trying

> modified atkins diet, We've done homeopathic remedies, uva ursi has

> been beneficial, digestive enzymes are great. WE ran a dry blood

> analysis and his pediatrician said it was the best one she ever got

> back, just showing some lymphatic problems. I do believe he has

> bacteria and yeast in the gut, but his stools look great. We also

do

> 5htp and melatonin. Jack is still not verbal but he signs what he

> wants, he is very playful, happy when not aggressive, a savant at

> puzzles, and very emotionally intact. If I am upset, he hugs me and

> lets me know he is concerned. I have triied many other things. I am

> also now a behavior analyst. I when to school when his behaviors

got

> really bad. We got behaviors under control with diet, Lamictal for

> the spikes in the frontal lobe, but my schooling has helped as well.

> I want some opinions on what to do now. I have not done b-12, but I

> have a prescription for it. His b-12 was high, but it probably was

> because of the bacteria in the gut. I am at the moment trying

> magnesium gluconate. I am not sure if he has low magnesium but I

> found an article suggesting, he may be low, and magnesium gluconate

> is suppose to be absorbed well. I also believe he may be a kid with

> excessive glutamate. I really want try Namenda. He eats mostly meat.

> I just wants some insight from someone that has a child that

> responded so well to Valtrex. Is your son off Valtrex? What should

> I do to try to wean him off Valtrex. Any ideas for bacteria? I also

> have three other children and work. I can't look at all the posts.

> I just need some other insight. Thanks for any advice.

>

> nne

>

>

>

>

>

>

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[Guest guest]

>

> what is considered to be an enzyme and what role do enzymes play?

Are these bacterial enzymes?

> Shouldn't a G/C F diet be pretty much standard w/all of these

treatments?

>

>

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Hi. Enzyme breaks down the foods, fat,protein,or carbrohydrates, i

dont know about bacterial enzymes, but i know if we dont give them

enzymes the unbroken foods will be used by bacteria and fungus.