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BeenThere

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    BeenThere reacted to Mamafour in Information about Plasma Exchange   
    Our daughter was treated with plasmapheresis in 2017. She has pandas/Pans but not Lyme (we think?). She was typically treated adequately with antibiotics but for whatever reason we couldn’t get that one flare under control with abx or prednisone, so we went looking for ivig. ..
    The immunologist we found had more success in his patients with plasmapheresis than ivig. Our daughter’s symptoms were severe at this point. It is also often easier to get insurance coverage for plasmapheresis than ivig, which is curious to me. For all these reasons, we went with plasmapheresis, and would do it again in a heartbeat. I cannot express how life-changing it was. (Two years out we may be needing it again, and if we do, I will be nothing but optimistic going into it.)
    We are in VA so I don’t think I can help as far as who can treat near you. However, don’t take the “it’s impossible to get in CA” and just give up.... start making phone calls. Call area hospitals and ask if they do plasmapheresis at ALL, regardless of reason. Ask which immunologists order it. Work backwards from there. You are at an advantage because of your son’s age, as the issue is often finding an apheresis unit with the capability of treating a peds patient. Your son is not a peds patient so you already don’t have that barrier! I do not have experience with Lyme related to plasmapheresis. Also don’t take the “insurance won’t cover” without checking your plan on your own. You can call and ask if the cpt code is covered (I don’t have it in front of me but could find it) and whether it needs preauth. Don’t give up.
    Hope I helped or at least gave hope. Good luck. 
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    BeenThere got a reaction from MomWithOCDSon in Do symptoms change after puberty?   
    I'm a little late but have to respond because our symptoms change meant that we - who were experienced with PANDAS - completely missed the "after puberty relapse" for 2 years.  Our son was diagnosed in 2010 or 11 at age 11.  We, the parents found this and worked to show and educate his pediatrician about PANDAS.  The symptoms at 11 years old were obvious - vocal and facial tics, tapping and counting, repetitive phrases and eventually only those phrases.  But he was a happy ticcer.  CBT did nothing as they said he was not anxious or depressed, but he had to do things his brain told him to do.  We had this thing "licked" after a year of high dose abx.  
    Flash forward to Spring and summer 2016 - my kid after sophomore year of college - top 5 school, national athlete - suddenly is so anxious he can't interact with high school students at a summer camp.  He feels everyone is "putting him down" or "out to get him".  Every interaction is stressful and eventually he would not leave the house.   His personality changed 100%. He alternated between despair and optimism but often felt completely apathetic. He begged for help, kept saying "something is wrong - this is not normal"  but to us the signs were invisible - no tics, no repetitions, nothing you could see.  He talked to a counselor (no value).  We never, ever thought PANDAS.  There was no similarity to his previous diagnosis.  However, his mental anguish was horrible and waxed and waned over the next two years until finally last June, after a case of strep that went untreated because he did not have a fever and was refused a swap test,  he completely fell apart with intrusive thoughts and irrational behavior.  Suddenly his dad said "this is completely irrational - it must be PANDAS"  The ASo titers came back at 932, Cunningham Panel (now existed) was 3/5 positive.
    I'm telling you we had not forgotten about PANDAS but the second time looked so completely different we, who were looking, completely missed it.  We're on it now but feel like he has suffered two extra years and we hope we are not too late.
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