ABX after IVIG

[saidie10]

We are seeing a Immunologist in San Antonio who is doing our sons IVIG in a couple of weeks. This is his first IVIG on a PANDAS child after 25 years of IVIG;s on sick children for many types of Immune and Blood Disorders. He is stepping outside of the box so to say but doing so because he does believes in PANDAS, knows and respects Dr. Cunningham and Dr. Swedo, and really does seem to want to help us. He does not however see the need for ABX post IVIG. How do I convince him otherwise? Anyone know of any good studies showing the need for it? I could possibly see the first Immunologist we saw in Dallas about the ABX but I really want this Immunologist in San Antonio to really get on board with the full treatment of a PANDAS child as I know it will benefit other parents searching for Doctors in this area! Any advice is appreciated!

[EAMom]

We are seeing a Immunologist in San Antonio who is doing our sons IVIG in a couple of weeks. This is his first IVIG on a PANDAS child after 25 years of IVIG;s on sick children for many types of Immune and Blood Disorders. He is stepping outside of the box so to say but doing so because he does believes in PANDAS, knows and respects Dr. Cunningham and Dr. Swedo, and really does seem to want to help us. He does not however see the need for ABX post IVIG. How do I convince him otherwise? Anyone know of any good studies showing the need for it? I could possibly see the first Immunologist we saw in Dallas about the ABX but I really want this Immunologist in San Antonio to really get on board with the full treatment of a PANDAS child as I know it will benefit other parents searching for Doctors in this area! Any advice is appreciated!

 

I don't know of any good studies that "show" you need antibiotics post-IVIG. In Swedo's PEX/IVIG study,the children were kept on antibiotics post IVIG as part of the study. http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

 

In the Turkish (plasmapheresis, not IVIg) study, http://www.turkpsikiyatri.com/en/default.aspx?modul=article&id=592 the men (had PANDAS which continued into adulthood) were NOT kept on abs post plasmapheresis, and that DID contribuate to relapses. The paper concluded:

Since there is always the risk of an exacerbation of symptoms due to intervening infections, penicillin prophylaxis can be suggested following plasmapheresis.

 

Perhaps it would make sense to suggest he consult with a doc who has treated more PANDAS patients??? I believe both Dr. B. and Dr. Latimer keep post IVIG kids on abs. Dr. K. also keeps them on abs (but only for a year, and 1x daily augmentin, which I don't completely agree with). Perhaps Dr. B would be a good bet for a consult because he is also an immunologist. Or...going out on a limb here? Why don't you send Sue Swedo an e-mail (she may respond). Tell her your immunologist has not treated a PANDAS patient with IVIG before, and you were curious as to what her recommendations would be re abs post IVIG (if your child should be on them or not). If you could get an e-mail from Swedo saying your child point blank, should be on abs, then I would hope that would settle the matter.

[EAMom]

Buster's FAQ also recommends Abs post IVIG.

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

However, I don't know if that would carry much weight with your doc? (I added the bold.)

 

Treatment: IVIG, Plasmapherisis, and Plasma Exchange

 

 

Q: What is IVIG and PEX?

IVIG stands for Intravenous Immunoglobulin. Immunoglobulin antibodies, type G, are extracted from donated blood. These antibodies are transferred to the recipient through an intravenous line. IVIG is used in many auto-immune diseases but the exact nature of how it works is not known. IVIG is highly anti-inflammatory and may help T-regulatory cells become re-activated to help remove anti-host antibodies. In addition, some of the infused antibodies may help recognize infected cells or bacteria that was missed by the recipient's own antibodies.

 

PEX technically stands for Plasma Exchange. It is sometimes used interchangeably (especially on this forum) with plasmapheresis. Plasmapheresis is a process of removing antibodies from the blood stream through filtration. In Plasma Exchange (PEX), another donor's plasma is added on the return so that new antibodies are added (similar to IVIG). Plasmapheresis is used in severe auto-immune diseases because it can address acute antibody levels.

 

Q: Why does IVIG or Plasmapheresis work?

A: PANDAS is thought to be caused by three events:

the creation of an antibody to Group A Beta-Hemolytic Streptococcus that can react with neuronal tissue

 

the failure of the immune system to suppress the antibody

 

a breach of the blood-brain barrier so that a B-cell or the antibody can reach the neuronal tissue

IVIG is highly anti-inflammatory and can close #3. There are also reports that IVIG resets the T-regulatory cells addressing #2. Plasmapherisis works by removing the antibodies in #1. Antibiotics also help with #1 by slowing an infection so the immune system can kill the bacteria. Once the antigen (the bacteria) is removed, the antibodies generally disappear in ~4-6 weeks.

 

Q: Do I need IVIG or PEX to cure PANDAS?

A: Most of the studies and certainly parents on this forum report that IVIG and PEX are helpful in putting PANDAS in remission, but don't "cure" PANDAS. There are many reports of PANDAS symptoms returning after re-exposure to GABHS. This is why many parents use long term prophylactic antibiotics. It is also important to mention that some parents report that antibiotics used aggressively at initial onset of symptoms seem to put PANDAS in remission.

 

Q: Is this a chronic condition or will IVIG and PEX fix what's wrong?

A: We don't know. There is good anecdotal evidence that IVIG and PEX have both been effective at removing 50+% of symptoms and that these treatments with prophylactic followup antibiotics have kept patients in remission for > 1 year. It does appear, however, that the prophylactic antibiotics is critical as many have had a recurrence when their child has been re-exposed to GABHS.

[momto2pandas]

Dr. B recommended only 3 months of antibiotics following IVIG for my kids. However, I don't know if this is his usual recommendation. Ds4 only got PANDAS as of the one infection he caught last fall and couldn't get rid of, and prior to that same (presumably) infection, ds6 did fine for years on just a couple of courses of antibiotics a year when he got sick -- so it seemed reasonable to think that if they could kick that one infection, they might be ok off of ab for a while. The immunologist we see now also agreed to do a trial off of antibiotics, but when the kids "failed" the trial after only 7-10 days, he said that we would just leave them on indefinitely from here on out and not try another trial off. He said that in his experience with PANDAS, there are cases where it's worth a trial off of antibiotics because a small minority do fine that way after IVIG (and we had reason to believe we might be among that group), but that in the end, almost all PANDAS kids need ongoing antibiotics.

 

Because of the failed trial off of antibiotics, we are now doing another high dose IVIG to get them back on track (in fact, they are being infused at this very moment). This isn't too bad since my kids get IVIG regularly and we're not paying much out of pocket, but particularly if I had been paying out of pocket or had to travel for this, based on what I know now I would not have risked doing IVIG at all without assurance of ongoing antibiotic treatment.

[JAG10]

This isn't scientific at all, but I work in an elementary school and September can be brutal for illness too for both children and adults. Every year I hear colleagues get annoyed we just got back to work from the summer break and they already need to use sick days. Last year was different though, H1N1 hit our area in the beginning of October.

 

Suggestions of contacting the go-to pandas docs for support seem wise. They are all so over-worked, they should welcome getting another IVIG prescribing doctor on board!