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Please help. We are on our 2nd round with Pandas and now Lyme co-infections with my DS(23). Twelve years ago he responded beautifully to abx. This time he has not responded to abx or to one round of IVIG (no response at 8 weeks). He has treated yeast successfully, mycoplasma and H pylori successfully, no active strep or viruses, although ASOs still high 400s and Dnase B at 300. Babesia duncani at 40, and possibly some bartonella - although no symptoms for any lyme or co-infections. Physically he is the picture of health. His symptoms as an adult are invisible but still debilitating - extreme social anxiety and consistent depression. We are seriously interested in plasma exchange as a next step. It seems logical that cleaning his blood of antibodies and then re-training the immune system would alleviate his symptoms. We would love to hear some current experience with this. Who is doing plasma exchange? Our provider said she would do it if she could; apparently its almost impossible to get in California. If insurance will not pay - how much does it cost and can one get the contract rate? Does it matter that DS has primary diagnosis of autoimmune encephalitis? I would really like to hear some recent experiences with this? Most comments I see are from 6-8 years ago. Does this mean that no one is getting plasma? It is listed as a front line treatment for AE, which many or most of our kids seems to have as a diagnosis. We have to make a decision about next steps. DS is not getting any better. NO better on the path we are on. Is plasma exchange a good option - obviously knowing there are no guarantees. Thanks for any help.
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Here is a very recent article on Sydenham's Chorea. From research, I am learning that children can have relaspes from this until the appropriate treatment is given. Most of the references at the end of this article can be found online for additional reading. My son will be going into the hospital next week and having a central tunneled line. He will also be starting plasma exchange treatments soon afterwards. Our insurance did approve the treatment. I did not realize the damage that strep could do until I started reading articles. My son would never test positive for strep when he was young. After he started taking antibiotics this year, he started testing positive for strep on a rapid strep test. He had the titer test back in December that checked for past strep infections and the levels were high. This finally got my doctors attention because I reminded him that my son would never test positive on rapid strep test. So my question to him was "When did my son have these strep infections?" I wish I had known to ask for a strep culture and maybe we would have caught on to this part sooner. Rapid strep test are not very reliable. I really wonder how many strep infections that my son had when he was younger that went untreated. http://www.bioline.org.br/request?pe14052 http://www.unboundmedicine.com/medline/citation/15968928/Treatment_of_Sydenham's_chorea_with_intravenous_immunoglobulin_plasma_exchange_or_prednisone
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help, anyone know where to get plasmapheresis/therapeutic apheresis on west coast, my son has been in severe flair for three years, past year has been life threatening for him and us, he is in critical condition and three dr's have rec plasmaphersis but cant find a dr that can order it and where. Stanford wont help. all I know of is dr L and dr B on east coast... anyone know? -
Has anyone found plasmapheresis on the west coast. My son has been suffering severely for past two years with bad flair and lex has been mentioned by llmd and two neurologists but don't know where to get it.
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My ds11 was diagnosed with PANDAS last december by dr.L. He has had anxiety and learning disabilities since 3. And when we started SSRI (at 5) we saw ADHD. We did IVIG this november when he started hurting himself in school (academics and social situations-a trigger). Since IVIG he is not able to go to school and its very hard for him to leave the house (raging, crying, getting "stuck"). Dr. L recommends PEX (she did not order cunningham test at time of diagnosis, his Lyme is negative, but high mycoplasma). We will be paying out of pocket ($27,000). Does anyone have a similar story where PEX worked (alleviated the most egregious behaviors)?
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I am asking this question because I am wondering how helpful IVIG or PEX could be? I'm also curious what types of symptoms that your child was experiencing before doing either one of these treatments. My son has memory issues, brain fog, vocal tics, daily headache, scalp pain, tremors, unable to stand. walk, or exercise due to tremors. I want to know if these symptoms can be caused by the brain antibodies that show up highly likely on the Cunningham Panel or could the Mycoplasma P be causing these or is it a combination of everything? I also want to know if either of these treatments can be done while your child is on an antibiotic because of a bacteral infection. I know some have had some success with these treatments and that it may take several treatments before results are seen. Just need to hear your good or bad experiences.