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DS is 17 1/2. His worst exacerbation was at ages 12/13. Two IVIGs at NIH got him back very briefly, after which he immediately got strep and had another exacerbation that was actually worse. Finally got him back, for the most part, after middle school. He functions at a fairly high level, but there is a continuous need to monitor symptoms and mess about with antibiotics and steroids every 8-10 weeks each time he is exposed to someone with strep and PANDAS symptoms start to re-emerge (OCD/paranoia/lying/refusal to eat/social challenges). Biggest challenge is that he barely eats even when things are at their best. At 6'1" tall but weighing only 125, he struggles with sensory issues and never feels hunger. We strongly believe the eating issues are brain inflammation related since he can eat a full meal fairly comfortably half an hour after taking a couple of ibuprofen.

 

So here's the thing - he hopes to head off to college in the fall. But he gets strep every couple of months even on prophylactic antibiotics, and he frequently fails to eat even with alarms to remind him.

We're thinking of pursuing plasmapheresis in hopes of getting him some sort of systemic reset. That being said, with multiple daily symptom checks and eating reminders, he is mostly in a good holding pattern at the moment. Since starting high school he has been an excellent student. And even though his social cognition waxes and wanes, he has been able to maintain friendships and participate in clubs & activities. Are we crazy to mess with the 87% positive that we have and risk jeopardizing it?

 

We believe that without some sort of major intervention DS will end up losing the freshman 15 instead of gaining it, and end up in the hospital and out of college in fairly short order. Anyone with BTDT experience with plasmapheresis, I would appreciate your thoughts. Thanks.

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Hi Bigmighty-

 

Glad your son is doing okay. Will share what I can, please feel free to PM me if I can answer any questions.

 

I can say that college is looming large for us right now, as my older daughter (with pandas) is a sophomore. I think about how it is going to go A LOT, and what we can do to prepare for a best and worst outcome, and all in between.

 

I have two daughters with pandas. One had plasma pheresis once, one had it twice. I will say, all three times were nothing short of miraculous for us, but were not long lasting "cures". My kids tend to be "normal" or in a pandas flare up. We don't have much time somewhat in the middle, although I will say in hindsight, that many times the period right before a flare up is not perfect. We have not really had longer term symptoms like you describe, but more episodic, crisis type flare ups of ocd and other issues. That being said, when they have had PEX, it has brought them back to 100% baseline. What a wonderful thing. For us, and themselves, to be able to get back to who they are supposed to be, without having to fight so hard every day to do the things that others take for granted.

 

 

It is a really hard decision to make, but I will say, I try to challenge myself not to accept less than 100% for them. I think if plasma pheresis is fairly accessible, and not going to totally break your budget then I would go for it. Starting college is hard, it is a notorious time for "normal" kids to struggle with mental health, I would want him to start as close to 100% as possible to help him hopefully sail through that period of transition.

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My son has been sick few years - but only diagnosed in February of 2015. He reacts very badly to steroids and fought PEX tooth and nail - but got it in May. It helped a great deal - but he is still very ill. It was basically the only thing that worked at all and even though he is still unable to leave the house, attend school, eat regularly or in anyone's presence, etc, all the violence and daily pleading to die stopped after plasmapheresis.

 

My son hated it - because being in the hospital is extremely anxiety inducing for him, but I think it was totally worth it.

 

We have actually just started Rituximab (only one of four infusions so far) in hopes that takes us the rest of the way - or at least further, towards recovery.

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My daughter also has the non eating issue. Forgetting to eat is not beyond her. We were recently told by our naturalist that a weak spleen needs lots of zinc to function, and poor appetite is related to zinc deficiency. So, if she is fighting an infection for a long time, low zinc stores would affect appetite..... We recently started her on zinc supplement, along with many others. I think we are seeing a difference.

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Copper/Zinc act in opposition to each other. If zinc is deficient usually copper levels are elevated. I've posted this article before but is very insightful. Describes how low zinc/copper impact diet and appetite. I would recommend testing zinc levels via SpectraCell. Their test looks at how the white blood cells are utilizing the vitamin/minerals inter-cellularly and is not a blood serum level test.

 

 

http://www.tvernonlac.com/copper-toxicity.html

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I also wanted to mention our children take 120 m.g. of zinc a day for the last three years to balance really high copper/low zinc levels. Copper levels have come way down but zinc levels are still borderline deficient. We run SpectraCell at least every six months to monitor vitamin and mineral levels. We supplement when anything comes up borderline on their result.

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Thanks all. Started him on zinc supplements and are hopeful that there will be some improvement to report on the eating front a few months from now. Decided not to pursue plasmapheresis per se. Instead, went ahead and scheduled a consult call w/Dr. K. Will see what he thinks is best with respect to attempting to get DS ready for possible college. Thanks again for the advice!

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this note is about the destination, college, not about treatment. perhaps, you should consider a local college with him staying at home and commuting. Speaking as a professor, I would start by taking two classes. Anything else seems to me unrealistic, setting him up for a failiure.

He'll have to deal not only with strep but also living away from home, pressures of a new place, other kids who will not understand his condition. And he'll have 4 YEARS of that.

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