Plasmapheresis

[Tamistwins]

Hi I was hoping to get positive and negatives from those of you who had plasmapheresis for your children. Would you recommend ?what positives have you seen from it vs other treatment you previously had. Which doctor did you use and was it covered by insurance?

Tia tami

Edited December 28, 2012 by Tamistwins

[beeskneesmommy]

Have not had it but we see Dr. Josephine Elia, formorly of CHOP (among other specialists) and she is the go-to gal for Plasmapheresis. That being said, she is relatively conservative, depending upon the age and onset of your kiddo. She will be practicing at Dupont in DE soon.

[melanie]

Dan had 5 pex nov 2011. Changed everything !! He also gets Ivig every 21 days for 2 1/2 years. If u can do it and the dr says its necessary. Do it. Dan had if at Nyu in his carotid artery.

[dcmom]

Both of my pandas daughters had it at georgetown university. Both were in pandas episodes at the time of pex, that we couldn't keep in control with steroids. They both responded amazingly well, and were back to baseline within a month.

 

It is not a cure for pandas- it can be a cure for an exacerbation. Since then we have tried to stay ahead of pandas- to not let them get to the point of needing it again.

 

Would have either of them have pex again if needed, in a heartbeat. Very tolerable procedure considering the life changing results.

 

good luck- it's expensive, and our insurance gave us a hard time- but they eventually covered it.

[Tamistwins]

Melanie and dcmom how old we're your children at that time? Who at NYU did this? I'm from nj.

[dcmom]

Tamistwins-

 

I am in NJ- too, now.

 

My kids were 6 and 9 at the time. They are now 9 and 12.

[Tamistwins]

Dcmom how was it coded what made insurance accept it and approve for it? I so want that miracle, something that will help these kids. My kids are 9.5 and 3.5 and we have been dealing with this from the age of 5 most likely age 2 or younger but 5 when it hit like a ton of bricks. I'm tired I want my kids to be happy.

[tpotter]

My kids also had PEX and IVIG. Also changed everything. My boys had it at G-town. But, as also noted, it's really important to stay ahead of the game. Neither PEX nor IVIG are cures for PANS. It's important to find all infection, and environmental issues, deal with the immune system, and so many more things. This is truly an autoimmune disorder triggered by infection and/or environemental assault. But, that being said, both my guys were in very, very bad shape, and the PEX was truly needed, and later the IVIG. I would definitely do it again if neeeded. Now, though, we are doing ART for one of my children.

[Tamistwins]

Tpotter what about the kids who have known infections that have not cleared. Is it ok to go ahead with plasmapheresis, will that rid the infections? Is pex and plasmapheresis the same thing?

[Tamistwins]

Can you name the doctors who have helped with this please.

[LNN]

For the purposes of this forum, Pex and plasmapheresis are the same procedure. We had it done 3 yrs ago at Georgetown with Dr L. It did help at the time and despite the risks, at the time I felt it was worth it. Our insurance covered but have no idea how it was coded and I think the co. has changed its policy as of this fall and no longer covers it.

 

My son did get better but as DCmom said - it helps with that particular exacerbation. It doesn't cure the disease. My son had undiagnosed lyme at after 8 weeks post-pex, he relapsed. A year later, we tried HD IVIG (lyme still undiagnosed at that point). It was a bad experience as it provoked a 10 week herx that was really, really rough. Pex will not clear an underlying infection. IVIG may help the body fight an existing infection but probably won't be enough to do it alone. You'd still need a long term strategy of antibiotics et al. Both are expensive and come with their own risks and recovery issues. My personal opinion is that if you only have a strep-induced issue, the infection is gone, your child is still in a bad place and you can afford it, that pex and/or IVIG are useful tools. But I have yet to hear of a child cured by either, no matter what any Pandas specialist says. Even those doing multiply HD IVIGs continue to give abx, supplements, therapies...that contribute to healing. I know as many kids who've gotten better without IVIG as I do who've done it.

 

If you have an underlying infection or environmental issues such as mold, chronic allergies that keep the immune system over-activated, methylation issues - then neither Pex nor IVIG are going to fix those things. To do it over again, I wouldn't. Not that they're bad options for some, but for us, they were temporary and expensive.

 

If you have issues beyond strep, I'd take your financial resources and put them toward an integrative doctor, LLMD or DAN instead. JMHO.

[melanie]

Dr najjar di the pex. He was 17

[tpotter]

Tpotter what about the kids who have known infections that have not cleared. Is it ok to go ahead with plasmapheresis, will that rid the infections? Is pex and plasmapheresis the same thing?

 

 

My kids had infections I did not even know about. PEX and IVIG helped them both...dramatically, but they were in extreme exacerbation, and needed something major to help them immediately. But, that being said, PEX and IVIG are not the cure that we all had hoped for. It is extremely important to keep looking for infections and environmental issues (such as mold, chemicals, etc. for instance), as the immune system is going to continue to be on overdrive if you don't deal with it. Also, this includes finding others in the child's environment who are also ill, as the child is hypersensitive to it. Even after all these years, we still seem to keep finding infection and other things (such as the mold we found and have been dealing with since August.)

 

Honestly, it's really hard to totally clear all infections. I really think it depends on just how serious the kids are at the time. My kids were in such a bad state that we didn't think twice about doing the PEX. We did think twice about the IVIG, being that it's a human blood product, but we're now not sorry we did either one of them (IVIG was done approximately 8 times total over a 1 1/2 year period.) I honestly don't know what I would do now if I knew then what I know now about all the other infections and environmental triggers. But, at that time, there is no doubt that it was exactly what they needed.

 

OK...now, for all you new families, I am going to throw a few suggestions out there (based on 5 years of experience treating this.) First, of all, I don't think that PANDAS, in and of itself actually exists (strep only). I think that the paper that came out in Feb, and the new NIMH website that came out in March have it right in saying that it's multiple infections and/or environmental triggers, and that's why they call it PANS. So many of us have eventually found that it was strep, and another infection, such as staph, lyme, mycoP, bartonella, babesia etc. Plus, there could be yeast, mold, chemicals that were sprayed. And, then there's the way the child's immune system reacts to it, and/or clears it. A lot of our kids have turned out to have MTFHR gene mutation which makes it difficult for the child/person to process vitamins/toxins, etc. (LLM knows way more about that than I do.) As it turns out, both my kids have a single gene mutation, and I ended up have a double (homozygous...totally unbeknownst to me, which kind of explains why I have been sick for so many years.) In my family, we have uncovered strep, staph, lyme, bartonella, babesia, erlichiosis, mold, yeast, MTHFR gene mutations, and on and on, and on.

 

So, all that to explain my answer to the PEX/IVIG question. I know there are going to be a lot of people who get upset with me, but I truly have to say it. Only you and your doctor can really decide if PEX/IVIG is warranted, but you absolutely have to treat for more, evenutally. And, you have to support the immune system, and treat the infections, etc. (there are a lot of ways...currently we are doing abx, homeopathy, supplements, herbs, accupuncture, ART, and chiropractics.) If your child is critical, in my opinion, I would definitely do the PEX or IVIG, because they may truly need that (my younger son especially needed that, because I'm not sure he'd be alive today, if we hadn't done that.) He had also been accutely sick for 4 years before we got a dx, and then it took us nearly 1 more year to get a dx.

 

In answer to the question about coding. Our children were diagnosed with post-infectious encephalitis for the PEX, and also were found to have specific autoimmune deficiency (in their case to the strep pneumo titers) for the IVIG. We still had to fight, but eventually won.

 

I agree with LLM, in saying that you would probably be better off spending your money on integrative, LLMD, and/or DAN doc, and only consider IVIG and/or PEX if the child is really critical.

 

Also, for those of you who are new to this, the Lyme forum discusses way more than just Lyme...it discusses all these other things I have mentioned. I really think it's worth looking at both these forums (PANDAS/PANS, and Lyme).

[dcmom]

tpotter-

 

I just want to respectfully disagree with one thing you said. When the NIMH paper states there are multiple infectious triggers for PANS- my understanding of it (and what we have seen in both of my kids) is that many infections can cause a pans like illness, not just strep- but it is not requiring that there be multiple infections at once.

 

Both of my kids were triggered by strep. Both remitted with pex- and stayed at about 100% for over a year. Both relapse when there are infectious triggers. Both (so far) respond well to immune modulation- and seem to remit until next infection.

 

Clearing infection does not seem to be an issue for us. They clear infections just as a "normal" kid, but then autoimmunity results- which we have to treat with appropriate methods.

 

So- so far for us- it has been, well, relatively straightforward. Just wanted that on record for new parents- as if this is the case for your child- you do not need to go to extra ordinary measures to look for, or clear, multiple infections.

 

I am not disputing your experience at all- just saying there is a simpler version.

[oivay]

We had very good results from PEX, which we did through Dr. Elia at CHOP about 2 years ago. We also used Dr. T. You could absolutely see a difference by the 2nd treatment. (She was diagnosed with both Pandas and Sydenham's chorea, but the majority of her symptoms were debilitating chorea.)

 

My daughter has been symptom free since, although she's still on abx, but it's getting to the point where she is refusing to take them due to gastro issues.

We had tried pretty much everything before that, abx, steroids, all sorts of drugs, etc., and then tonsillectomies on both kids.

We also did some physical therapy afterward as her leg had become kind of twisted from all the choreiform movements.

 

I'd do it again in a second if we had to. It was covered by insurance (Cigna).