Plasmapheresis

[Tamistwins]

Thank you very much for all your responses and help. We also have tried all different antibiotics, herbals, homeopathy, Ivig, steroids. In sure there's so many more things to try but I am not seeing results with anything anymore.

Thanks again!

[911RN]

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.

[911RN]

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.

 

 

 

Below was my analogy that I posted before... yet, it still helps me to understand the PANS/PITANDS/PANDAS thing....I think it is more the "antibodies" causing problems....infections are just the triggers to the antibodies that are already there in the brain hanging out ready to be trouble makers. This helps me make sense that it is more the "auto immune" process than an infectious process. Auto immune meaning the body is attacking itself virtually through a process that it once protected itself. Formed antibodies to an infection (good thing), however,they went astray and took up residence in the wrong place(brain)- (bad thing). Perhaps, that is the reason folks do not see "cure" with IVIG, PEX, long term antibiotics etc. But, helps with exacerbation? I'm no expert....just one Mom's way of trying to wrap my head around the whole thing:

 

My take on the whole process and how my brain made sense of it is this: One is exposed to infectious trigger (strep, whatever)- body forms antibodies (which are essentially amino acid proteins)- this is what our body is supposed to do to fight infections and recover (bacterial or viral!)- these antibodies cross the BBB when they truly should not- become antinueronal antibodies- reside and attach themselves to brain tissue- live in the basal ganglia in a somewhat dormant state. Just hanging out- (sitting around brain dead, bored, playing Xbox:). Have another infectious trigger (somebody brings the beer)- the dormant residents (Antineuronal antibodies) come "alive" and begin to party and bounce all around the joint- inviting their friends (CamKinase II). The place become overflowed- inflammation causing swelling in the basal ganglia. The place is getting trashed- symptoms of tics, OCD, decline in writing, math skills etc. until the parents or cops show up- antibiotics, IVIG, PEX (clears body of some antibodies), removal of the infectious trigger, time, T&A, glutamte blockers, SSRI's etc. All this helps to restore some order and decrease the inflammation....crowd thins out, party calms down....however, the residents never really leave.Go quiet again. Ready to party again and invite their friends with next trigger. Some higher end treatments like PEX, IVIG etc may have better luck at thinning the crowd and diminishing the size of "returning party"- in advent of trigger. Age and puberty may help as well also... just because of the body's immune system matures, thymus goes dead and one does not have the highly "reactive" process to infections or triggers as an adult as one does as a child.

 

That's my simplistic analogy. I think it is also possible for ANA's to live dormant in other parts of the brain- not just basal ganglia. That's why our kids have such differing symptoms. Once they are able to cross The BBB- all bets are off- in my view. Can live wherever they want in the brain and cause havoc (if activated) in the presence of infectious/environmental trigger. Different parts of the brain are responsible for different symptoms and behaviors.

 

Could I be totally wrong...absolutely!! However, this is my guiding principal. On how I decide what and how to treat. I chose not to do long term antibiotics because after 90 days the positive "effects" wore off. I did not feel as I was targeting the antibody problem with antibiotics. He was not a sickly child and I was hesitant of antibiotic resistance and other complications from long term antibiotics. Chasing other demons, so to speak, with effects of antibiotics. Not that everyone has to agree or chose this path...it was just our case. Chances of fighting for IVIG or PEX was slim to none as my child was not debilitated "enough." If I thought he could get PEX---I would go for it.

 

Like you, DcMom, clearing infections does not seem to be the problem for us....it's the aftermath of infections and the antibody response, in the brain, which is a much harder animal to target.