IVIG and plasmapheresis ....

[Guest guest]

>

1. You may want to look into research regarding the myelin in the brain

and its connection to the immune system. One of the NeuroSPECT scans

that used to be done (but I understand no longer is) looked for 'scalloping'

of myelin in the brain.

2. How sad that your child had to go thru plasmapheresis. My husband had

7 cleanings when he Guillian Barre Syndrome. The specialists opted against

IVIG since Steve was diagnosed early. Both options are used to calm

and confuse the immune system. The only difference is IVIG is made

from " no less that 100 donors " ; the plasma given in plasmapheresis

is man-made

During the conference in Bethesda 3-4 yrs ago, a Doctor gave a talk

on the use of IVIG and plasmapheresis in autistic children. The result of

the

study showed improvement while the children were on the treatment

but the children regressed when the treatment was stopped.

doris

> Message: 4

> Date: Sun, 14 Jul 2002 15:26:46 EDT

> From: LJKorenko@...

> Subject: Re: IS YOUR SON ON ANTIVIRALS?

>

> 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>-

> {{{{{{{

>

>