LaurenK

Vitamin E helps my son a lot. We also just recently started working with Dr. Bouboulis. Not sure if IVIG is the right path for us either. So scared too. Could your son be struggling with something viral??

Can you have bartonella without neuropychiatric symptoms??

Kimballot, how exactly are you dealing with the Lyme and how long were you told that Lyme treatment would take??

My son did great after the first but became worse after the second. Dr. T said that when you harvest antibodies from many people, you can get PANDAS antibodies. Just the luck of the draw. We are aggressively going after yeast now to repair leaky gut, in hopes that his immune system can recover as it is all effected in the gut. No yeast diet, nystatin 2 x a day, mega probiotics, capric acid...plus b12 injections, b6, calcium and magnesium. I'm so sick of this disease and being let down over and over again in our attempts. Nancy We have seen Dr. Bouboulis and he said that there are so so many antibodies that it is unlikely that my son would just get a "PANDAS" batch of auto-antibodies. We are concerned because my son does have Lyme and Mycoplasma. We are worried about a big herx reaction.

Today, I took my son to see a PANDAS specialist who did reccomend IVIG every 8 weeks while we go after the other infections. My question is, has anyone else here only gotten worse after IVIG?

Have you ever done Pex or steroids with any response??

Christianmom, I was wondering if you ever have done IVIG with with your son?? Did it work with the Lyme?

Will insurance companies cover IVIG for this??

You could add Dr. Hollander in New York. He is opening and IVIG infusion center later this year.

I think there was a girl a while back here who spoke 5 languages and had PANDAS?? I read on the forum before joining. I read something specific about languages and children with PANDAS. Don't know where the thread is though.

My son has both Aspergers and now a diagnosis of PANDAS. However, he had tics, OCD and anxiety before the PANDAS diagnosis. How can I tell these diseases apart. They overlap so much.

Melanie, I am new to this forum and am very interested in your story because my son is also on the spectrum. He has aspergers. Would you say that the PEX helped his ASD symptoms as well?

Would it be possible to do IVIG every 8 weeks?

There was a time when there was a direct correlation between symptom reduction and treatment. In the past year or so it has become less clear as to whether or not treatment is helping. It could be that a "normal" population of b cells cause problems for my daughter as a result of bbb permeability. B cells begin to regenerate about 3 months after treatment. We can only treat with chemotherapy every 6 months, at the most. Her symptoms at this point may also be caused by permanent brain injury from years of attack. We will not know what is really going on until we end all immunosuppression and see what happens. If she stays the same, then we'll be stuck with brain injury. If she worsens, we'll have to return to some form of immunosuppression. Does that make sense? It's totally confusing I know. even when you "reset" the immune system the b cells come back??

I'm lost though, how can your daughters immune system be causing these symptoms if she is on immunosuppressive drugs? Don't they in fact suppress the bad reaction? And taking her off of them in a flare, wouldn't that only cause the symptoms to get worse?

Could you explain a little bit more about the condition? Is the damage from the condition permanent? Did any of the "bandaids" work? Ironically I was just reading a post from you not that long ago about low dose cellcept. Did that become ineffective? I'm curious to know. As far as cytokines, we were told that il17-a might be a problem.

Reading my mind... soooo tempting at times! The wicked side of me thinks it might be fun to arrive in his office, new paper in hand, choosing the tests I want him to run and asking him for his 'interpretation' of why my child's titers never rise in the midst of a flaming strep infection... maybe his brief Immunoglobulin G test will answer that question for him... sigh. I'll pass on the psych meds though; they seem to exacerbate the situation. We happened to be in our Peds office yesterday & briefly discussed the article. Her closing comment on the topic as she reached for a rapid & culture for my daughter was, "Well, they can refute it all they want; reasonable people will still disagree." Thankfully, medicine has moved more into meta-analysis of literature and this is not even a study, but more of an opinion/position paper. Let's hope the rest of the medical world is more adept at locating the rest of the research and making their own interpretations. Singer would probably perscribe a glutamate antagonist, which by the way removed at least 50% of my sons PANDAS symptoms within two weeks of taking it. Out pychiatrist also said that excess dopamine induces pro-inflammatory cytokines so in blocking it or decreasing it, you are also decrease the pro-inflammatory cascade.

I truly don't understand why everyone is so angry. My child has PANDAS. However, Singers discovery about glutamate and kurlans discovery about the low dose dopamine agonist for tourettes have helped my son tremendously. Swedo's discovery also helped my son. Kurlan and Singer even admit that the current treatments for tourettes have serious side effects and they are looking for new drugs and procedures that don't induce the same problems as current psychotropic medications. It's not as if these doctors are sitting around and doing nothing at all. I think it's good that doctors debate back and fourth. Singer and Kurlan do make some valid points. If you look on Dr. T's webpage, he posted an article a while back about gene discovered in tourettes. I believe is has to do with histamine transmission. Singer wrote an article not that long ago too about H3 antagonists being used for tourettes as a novel treatment. Currently there are drugs in clinical trials to modulate histamine & glutamate most likely because of Singer. I'm sorry but to bash doctors like that, I find to be incredibly inappropriate. Unless you are on the inside and you know their exact intentions, you cannot just trash what they say. Frankly, some of their discoveries have helped A LOT. Everyone here is so focused on the "root cause," only because the current drugs or past drugs have side effects. That may not always be the case. Would you spend hours upon hours on a forum researching allergies or just take zyrtec?

Wouldn't a rapid strep test not necessarily be accurate if a child is a strep carrier? I thought they did reccomend the blood test which is the most telling?

Hm, but they say " Although inclusion in CANS requires only the acute dramatic onset of symptoms, we mandate a comprehensive history and examination, consideration of a differential diagnosis, an active search for a specific etiology through appropriate laboratory testing, and treatment with the most appropriate therapy. " They don't say "don't use immunosuppressive therapy," they just say use the most appropriate therapy.

Perhaps that's because many here seem to have not caught it early due to lack of medical help?

When will PANDAS be accepted main stream? Any opinions from those who have seen PANDAS specialists?? We haven't seen any yet and the docs we have seen... well they haven't been the most supportive? this is frustrating!

I've heard that mycoplasma is near impossible to eradicate though, that essentially it always will stay at a dormant level? Is that what the goal should be, keeping it dormant? Can you just continue doing high dose IVIG's monthly indefinately?

Thanks so much for your input tpotter. However, if IVIG does in fact reboot, so to say wouldn't it make the immune system no longer react to the mycoplasma in that way if you do IVIG enough times? Isn't the whole theory behind PANDAS a sort of resistant form of strep, but IVIG puts things into remission. Im quite lost with the whole idea of chronic infections.

but if the goal of IVIG is to sort of "reboot" the immune system wouldn't the chronic infection not matter all that much because you are rebooting?