Re: IS YOUR SON ON ANTIVIRALS?

July 14, 2002

Howdy all,

I've been reading everyone's posts with interest. The infection/immune

system connection to the brain is very interesting and makes sense to me

because it's clearly happened with my daughter. (medically documented by the

medical world- blah, blah, blah)

I'm curious to know what's the average dosage amount for antivirals and

antifungals and if close monitoring is used? I ask because my daughter had

to go on chemotherapy for her immune dsyfunction disease (overactive immune

system that saw cancer cells but, also attacked her brain). During

chemotherapy there was many times she had to be on antivirals and

antifungals. These drugs were not used lightly in our situation and were

watched closely.

For two years she was on 100mg. diflucan everyday because she was a yeast

magnet- which she still is after a year and half off immune suppression

therapy. She's also been on a slew of other anti fungals.

She was also on periodic anti virals.

While on these types of drugs we had to do often blood tests because they can

adversely affect the kidneys and bone marrow production. We had to remove or

tweak dosages because we did at times see change in kidney/marrow function.

One of the best drugs used in a that helped with immune balancing and

changing brain function was IVIG. (intravenous immune globulin) The first

time we gave it to her she was walking again in two weeks. She also stayed

very healthy while receiving it. IVIG is is basically a bottle of

antibodies. It kept a's immune system from creating antibodies and

also provided her with antibodies to fight infections.

Another interesting therapy that was incredible was plasmapheresis. It's not

chelation but, sort of close. She was hooked up to a dialysis machine that

removed the plasma from her blood- which means it removed her circulating

antibodies. We would then infuse the IVIG. We saw an IMMEDIATE response.

It was very very eerie. One day she was highly aggitated, moods were

bouncing all over the place and her speech was nonexistant. The next day she

was full of smiles, happy and beginning to communicate. It was really

bizarre.

I highly doubt that our local pediatrician would buy the " continued " immune

connection to a's problems. She obviously agrees that a's

disease created a's behavioral problems. But, she is like a lot of

other doctors believe that the brain damage has already occured and we are

now dealing with already created brain damage. They believe that the goal

now is to " rewire " the damaged brain. They don't believe it's an ongoing

process with a connection to her immune system. I agree that she has brain

damage but, I can only assume that her immune system was not normal to begin

with how can it possibly be 100% at this point. Who knows?? She's currently

diagnosed ADHD, bipolar like behavior, OCD (mild), and general behavior

issues. I am going to question her neurologist though. Her neurologist is

one of the " specialists " of her disease that created all the behavior issues.

The interesting connection I find is that those children with a's

disease tend to get a lot of the same behavior problems and all of them had

the immune disease. Most of our children are said to have autism-like

behaviors but, very few are truly diagnosed with it. Aspergers tends to be

the catch phrase for some. a is very communitive but, has a lot of

asperger-like tendencies. Nobody has dared to put this label on her. I

guess the ADHD is more " acceptable " . Who knows!!

a got sick at 19 months old and all immunizations were stopped. During

treatment she lost all her titers for her previous immunizations. Up until

now all immunizations were a no-no. We didn't know if we triggered a strong

response from the immune system if whether it would start attacking the brain

again. She's scheduled to start her immunizations again after she has her

tonsils removed. (her tonsils being a whole nother issue in itself) I'm

afraid to do the immunizations...

Everyone believes her immune system is " cured " but, she continues to have

many behavior issues and for us OMS (her disease name) parents, we know the

first signs of relaspe start with behavioral changes for the worse. For

months now I've been torn whether to do immunizations... and I'm a real

believer for getting kids immunized. Do your kids discontinue immunizations?

Thanks,

" Sometimes you get shown the light in the strangest of places if you look at

it right "

,mom to -a 7 (nbII with oms 11/96), Kelsey 10, and 14. Wife

to

-<A HREF= " http://www.pilink.com/page/stinaboleeena/ " >Miss Stina Boleeena's

Updates</A>-

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July 15, 2002

,

An amazing story!

Dr G prescribes anti-fungals like Diflucan, Nizoral etc. 100mg per day is a

common dose - he starts lower and builds up, depending on age/weight.

Anti-Fungals include Valtrex or FamVir. He is very careful with dose, and

monitors vital organ function and blood counts constantly through CBC, chem

panels and liver function tests - 4-6 weeks if needed. My son started on IM

Gamma Globulin earlier in the year - every 3 weeks. Slightly more

conservative approach than IV - Dr G's concern is the quality if the IV

supply. However IM therapy does seem be helping in our overall therapy

approach.