I'm also a member of a group for Oklahoma and this is a post from that forum. I looked up IVI out of curiousity and Plasmapherisis. They seem to be treatments for autoimine disorders. Here's the post :

Hi. Has anyone had any experience with IVIg treatments or Plasmapheresis for Tourettes or OCD? My 10 year old son has had 2 IVIg treatments so far. The first one, last July, had wonderful results after about a month. The last treatment, this April, has gone in the opposite direction. He did not get the same amount that he did last July. His doctor is doing alot of checking around to see what the doses should be and how often. If the IVIg treatments don't work, he said we may have to do the plasmapheresis. Does anyone have experience with this also?

One more question, have any of you had your children seen by a geneticist? That was another possibility for my son.

Thanks so much in advance,
Tina Westfall
Tulsa
10 yr old son, TS, OCD, ADHD, speech/language disorder


Here's what I found out about the procedure -

"mechanically remove autoantibodies from the bloodstream in a process similar to that used in an "artificial kidney," or dialysis, treatment. The procedure became known as plasmapheresis, meaning plasma separation. It's also known as plasma exchange."

and:

Plasmapheresis is a process in which the fluid part of the blood, called plasma, is removed from blood cells by a device known as a cell separator. The separator works either by spinning the blood at high speed to separate the cells from the fluid or by passing the blood through a membrane with pores so small that only the fluid part of the blood can pass through. The cells are returned to the person undergoing treatment, while the plasma, which contains the antibodies, is discarded and replaced with other fluids. Medication to keep the blood from clotting (an anticoagulant) is given through a vein during the procedure.

Now is this lady just nuts or what? Why would you do this procedure on someone with TS, OCD and ADHD??? It just doesn't make any sense. So, I thought I'd ask the experts......you guys.
Any knowlege on this?? What's the deal with this??

Lisa

Never heard of it. To my knowledge, neither tourettes, OCD or ADHD are caused by blood-borne pathogens or antibodies in blood plasma. I'm highly suspicious of this "treatment".

I have Tourettes, and this is the first time I have ever heard of such a procedure. Tourettes is a neurobiological disorder and is genetic. I attended a TS Conference that my doctors host in Houston every 2 years. This treatment was not mentioned. I agree with Big in being high suspicious of such a treatment.

Did anyone ask Tina for permission to post her message on here? I'm sorry to sound so abrupt, but I'm that Tina and imagine my surprise to find my post on here with a note questioning whether I'm nuts or not.

My son has a high level of strep in his blood stream and the IVIg drops the strep in his blood to a normal level. His blood is not filtered, he has immunoglobulin put into his system by IV. It really has helped and he is seeing one of the best neurologists in Tulsa and also the top neurologist in the nation down in Houston. During all of this, the neurologist in Tulsa is also in contact with a specialist on the East coast. After an IVIg procedure, my son is like a "normal" child. He has no tics, no OCD symptoms and minimal hyperactivity after having this procedure. I would recommend this to anyone who has tried everything else and nothing has worked. Just wanted to give everyone an update. Thanks for listening.
Tina

Thanks Tina for that update. I was under the impression as well that the treatment wasn't actually for the disorders as much as it was for another medical condition, and you confirmed that. I also stand with you in my anger that the original poster posted someone elses writing without permission.

My husband has been having plasmapheresis treatments for about 4 years now. He was found to have a rare hereditary form of hypertriglyceridemia. His body mass produces triglycerides, but can not rid itself of them. His levels have been over 10,000. This has also led to several bouts of pancreatitis. He has an artificial vein in the left arm that is used as the 'stick' point for treatments. Others getting this treatment that I am familiar with have had some form of my husband's disease, or some form of cancer. Diet, meds, etc., have no effect - only the plasmapheresis can remove it from his body.
I am curious if anyone knows what centers in Texas perform this. We currently only know of 2 (San Antonio & Dallas) - but would like to try to find a location closer to our home instead of the long drives we now have to make.
I will gladly share with anyone the ups and downs this has brought into my husband's life. I do know it is very exhausting to him, but after a few days his energy level is back and he feels like his old self for a while. He generally has treatments every 2 to 4 weeks.

IVIG is a possible treatment for some who get strep and then develop ts, ocd.
THe strep infection goes and hits the basal ganglia on the brain thus causing ts, ocd.
Dr. Susan Swedo from the National Inst. of Mental Health is doing the research on this , its called PANDAS- ped. autoimmunce deficiency defiency ***. with strep.
Anyone intrested can go to the National Inst. OF Mental Health for more. THe ivig and plasma exchange is still in the experimental stage.

Thanks. I appreciate the reference.

I had plasmapheresis twice a week for over a year because I was part of a donor program. If this person is right, then I guess I gave AD/HD to the poor blokes who got my plasma!

The procedure itself is basically like giving blood except it takes longer (about an hour) and you feel basically fine after because you lose very few red blood cells. You get IV fluids afterward to replenish most of what you lost.

As a treatment for some disorders that actually involve the blood, I can definitely see how it would work. As a means of collecting antibodies to make immune globulin, it saves lives. (This is how babies with Rh+ blood who are born to Rh- mothers are able to live and be healthy - without it, they are in a lot of trouble.) But as a treatment for AD/HD, I think it's bunk.