Re: IVIG and plasmapheresis ....

[Guest guest]

Hello sjsmith@... (Steve and Doris ),

In reference to your comment:

è 2. How sad that your child

è had to go thru plasmapheresis. My husband had     7

è cleanings when he Guillian Barre Syndrome. The

è specialists opted against     IVIG since Steve was

è diagnosed early. Both options are used to calm     and

è confuse the immune system. The only difference is

è IVIG is made     from " no less that 100 donors " ; the

è plasma given in plasmapheresis     is man-made

I don't regret for one moment that we did plasmapheresis. It was a

relatively " painless " procedure and offered my child a 7 month remission from

an overactive immune system. It allowed her to gain skills that she

otherwise could not get. There are a few other kids that have done the

plasmapheresis that are followed with long term low dose immune suppression

and they remain in remission. a's disease is like most other diseases,

what works for some won't work for others.

The disease process in OMS is startling. They go from being completely

normal to being invalid, behavioral mess in a matter of a few days. Our

first goal is to get motor skills restored. Sadly, this seems the ultimate

goal of the medical professionals. The behavioral aspect is not deeply

investigated. Our kids are given psychotrophic meds (which thank god has

helped a) and the parents are left to fend for themselves. A few of us

have neurologists that " believe " us when we see our kids behavior deteriote

and correlate it to the immune system going crazy on the brain.

Sadly, the immune system goes extensively bonkers in OMS kids. It wipes out

their gross motor, fine motor, speech, congitive, and behavior. At the peak

of involvement a could not sit, eat, walk, and she shook like she had

parkisons and her eyes bounced up and down, left to right and in circles.

She had complete vertigo and her basic survival skill was to feel safe.

Longterm, children fall into a spectrum of deficits.

I certainly agree that IVIG is not an easy avenue. And I really doubt a

doctor would give whooping doses (required to greatly affect the immune

system) of IVIG for long term behavior changes. a got 10,000 dollars

worth of IVIG every month and it was justified by her brain involvement in

everything. Beyond motor function her doctors would not agree to using it.

A few months I approached her neurologist on this. a's ADHD and mania

was going crazy and I wondered what would happen if we gave her IVIG since

she always improved behaviorally after a dose. Her doctor informed me that

the cost, availibility and risk would not warrant giving " just to see if it

improved her behavior " . IVIG is also in very very short demand and only

allocated to those that are immune deficit or have an autoimmune disease that

has a clear record of using IVIG. Some OMS kids have had to be delayed in

treatment because of available dose. The usual dose is .5grams per kilo for

low immune systems. For hyperimmune systems it's somewhere at 2grams per

kilo. And yes, it's a " pooled " blood product. We were told it takes around

500 donors to get the plasma for IVIG.

We didn't do plasma exchange... we did straight pheresis. To make up for the

volume we used whole red blood to prime the machine (a child's body cannot

give up the blood that it would take to get the machine going and albumen

(protein plasma -blood product) to replace the plasma being removed.

She did 14 pheresis treatments along with 7 more stem cell pheresis (which

was used to collect stemcells for her eventual stemcell transplant).

The main drawback we had with IVIG and pheresis was the use of blood

products. Unfortunately, IVIG and steroid treatment are the only known

treatments that are effective in reducing the OMS attack on the brain.

I shutter to think of the blood products that a has received, but I

don't regret any of them. And she has had over 100 transfusion of one form

or another. Each one of them played a part in preserving a part of her

brain. Although, I have to live with the reality that it's only a matter of

time before a " new " virus or infection is found in blood that a has the

potential of having been exposed to.

a's disease is very complicated and not yet truly understood. It's

basically a very aggressive autoimmune response on the brain that is either

triggered by a cancer or virus. It causes brainwide damage which leaves a

child with a spectrum of problems that vary from child to child. Behavior

problems tend to be the most prevalent and long term issue in one form or

another.

We saved a's brain from perverse motor skills deficits but, what

process is aggravating the behavioral problems I don't know. Is there a

continued low level immune process or has the process stopped completely and

we just have clear cut brain damage that won't neccessarily change? If this

was understood than the disease would be better understood and if the disease

was better understood than the affect on how it affects the behavior would be

better understood.

So, we speculate and hope that we get guided in an individual treatment that

will work for our child.

here's a question for California families. Do any of your kids recieve CCS

(California Children's Services)? And if so, does Dr. G get covered? Does

Dr. G receive payment from any sort of state/federal programs? I couldn't

see myself affording the bill.

Thanks for your help.

" 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 left with ADHD, bipolar and OCD

tendencies and who knows what else...), Kelsey 10, and 14.  Wife to

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

Updates</A>-

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========Original Message========

Subj: IVIG and plasmapheresis ....

Date: 7/15/02 12:32:27 PM Pacific Daylight Time

From:    sjsmith@... (Steve and Doris )

Reply-to: <A HREF= " mailto: " > </A>

To:   

>

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>-

>     {{{{{{{

>

>