Phasmid

THANK YOU, THANK YOU!!!!!! I will be in touch by pm with you- SOOOOO HAPPPPPYYYYYYY FOR YOUR SON!! I almost cried reading that... okay, i DO have tears

My son's IgG Mycoplasma p. has been elevated 6x normal since last March. I believe it can stay elevated for long, long time, as some other titers do, showing that there is immune protection against it. Doesn't necessarily mean a present infection. IgM present would indicate a recent or ongoing infection. Nothing my son has taken has lowered the IgG in all that time.

These are good questions. Hard to answer though. In my son's case, he is very clear PANDAS, with no other neurological diagnosis, nor symptoms before PANDAS. He had very abrubt onset OCD, absolutely crazy, psycho behavior, motor tics and vocal tics after a long battle with strep pharyngitis/tonsillitis. He was the classic, "Who is this, and what have you done with my child." I have to laugh now (not really... more like cry and kick myself) about how long ago PANDAS was suggested for my son by a psychiatrist. He had his first episode (echolalia and chorea movements) in 2003. In 2004 he had his second, and that is when I described his illness to a psychiatrist (she hadn't even seen him!) and she said, "That sounds like PANDAS." CAN YOU BELIEVE I LAUGHED AT HER??? I thought SHE had gone off the deep end, not ME!! I mean, I had READ THE PAPER, ALREADY, REFUTING PANDAS. I wondered how she could still believe it??? If only...

NOTE: This letter is not for PANDAS, but for complex pain syndrome. Still, I thought it nicely formatted, and might be useful to have a "skeleton" to start with. You can replace everything with PANDAS info. Helps give some ideas for organizing the information. Found this and thought that it might be useful for us working on appeal or possibly faced with it. Might be good to draft one up BEFORE you need to- this way it can be in the mail the day that you get your denial! http://www.advocacyforpatients.org/pdf/crps/crps_sample_appeal_letter.pdf

Because he had a positive stool toxin test for C. diff., so Flagyl is first course of action. Just happened to make all is overnight onset OCD/vocal tics go away in matter of days. Yet, his docs didn't think that any of his psych. symptoms could be related to C. diff infection. His G.I. specialist, however, didn't doubt that some symptoms could result, as the toxins produced by Clostridium difficile are pretty nasty, although not known neurotoxins, like Clostridium botulinum produces. Toxins that are released in the gut can travel directly to the brain via the vagus nerve. He just shrugged his shoulders. Anyway, we had to add vancomycin when he relapsed after stopping flagyl! That really did the trick! Crazy, huh? Maybe some of this IS gut related!? Very interesting about Flagyl---why did they prescribe Flagyl vs. something else? I only know flagyl from when my oldest had C-diff at age 2....

With low dose IVIG, there is a "replenishing" of the troops, in continuation of the same analogy, where before there weren't enough to fight. With high dose IVIG, there is a message sent to the troops that they can take it easy, and there is a temporary cessation of antibody production. With plasma exchange, the patient's blood is filtered, and new antibodies added. With plasmapheresis, the blood is filtered, with bad antibodies removed, but new antibodies are not added. Still, it is not fully understood how PANDAS symptoms are helped by IVIG. With plasmapheresis/exchange, the removal of autoantibodies results in reduction of symptoms. I don't know exactly how.

Well, I can try, but I am GUESSING... okay? My GUESS is that when the memory B cells are copied, the "clones" get the same "orders" that the original "soldiers" received from "headquarters." Rather than calling in all the soldiers and explaining that a mistake has been made, that they no longer need to go after stuff that looks like certain cells, the next watch of soldiers gets the same bad information. The faulty offensive continues and the self cells, those which the immune cells are supposed to be protecting, are harmed in some way. Since antibiotics do not have any effect on these faulty immune cells, but mainly work on bacteria (couple of different mechanisms), these immune cells continue to circulate. Here is where I mention something I told myself I wouldn't mention, because I have only second hand information right now, and I have been trying to get the mom who has direct experience to post here... There is a physician, Dowain Wright, M.D. at Children's Hospital of Central California, who has performed a new therapy wherein these "bad antibodies" responsible for keeping the autoimmune process active, to treat PANDAS. It is a form of B cell ablation- wiping out the B cells using chemo drugs. I'm sure this would be reserved for only horribly incapacitated children for obvious reasons. I won't say anymore about this until this mom post's on this herself. http://onlinelibrary.wiley.com/doi/10.1002/art.10476/pdf

Oh, gosh, thanks so much for letting me know. Just that we're kinda out in the "sticks" where I am. But I'm sure our little hospital could handle the rare allergic reaction or other problem. And I realize that many kids get this routinely, not a big deal. Thanks again.

Hi Eljo, all I have to go on, regarding how one knows what dose does what, is what Dr. K. told me about treating the pre-anorexia body dysmorphic stuff and the trichotillomania. I am of no help in terms of tics. Dr. K said that only high dose treats the disordered body image, and that trichotillomania has resolved with high dose in his practice. My son's doc has never seen trichotillomania, although he routinely uses IVIg for PANDAS, but he has only about a dozen cases. So, I had to ask Dr. K. and he was so nice to reply (even if it was exactly three words). What antibiotic is your daughter on? The last time my son had tics, he actually had severe ocd and coprolalia, he responded VERY quickly to something that still perplexes me to this day- Flagyl! That was followed by vancomycin until he was over it. I can't wrack my brain over it anymore as to why that worked when (if strep) it shouldn't have... really. However, he also had bronchitis/bronchiolitis and possibly pneumonia from Mycoplasma pneumoniae a few weeks earlier- still has hugely elevated IgG. If THAT was the trigger for his symptoms, then the Flagyl and vanco may have been effective for that. I just don't know anymore!

Thanks for the support. Good to hear he can get the high dose at home as well. I heard from doc that they will pay, but has to be at home. I am a little afraid of this, because he had such a bad headache/nausea a day after LOW dose. So.. what may happen after high dose? Might it be worse side effects? Oh well. We'll figure it out. Thanks again.

I don't know about general, across the board failure of these with kids having PANDAS. My son did take 25-50 mg. of Zoloft for a while. It DID help his anxiety and it MAY have helped him focus long enough to do homework, but it never was a total "fix." It may have even helped him stop pulling his lashes/brows for a while. But, AS SOON AS HE WENT OFF the meds, all came back with vengeance. In addition, it had a negative effect in that it caused significant disinhibition! He was always in trouble at school, in trouble with friends, in trouble at home, because it caused him to act impulsively and without regard for consequence. He would say or do anything. I finally had to stop giving it.

Yes, this is really hard to grasp. I STILL have difficulty believing it happens! But then I think of how easy it is to become "exposed" to pathogens- they are EVERYWHERE at all times! When I was a working biologist, I did some work with cultures- growing microbes on a petri plate for educational purposes. It was nearly impossible to keep plates from being contaminated no matter how diligent my "aseptic technique" was. I was NOT working in a sterile, environmentally controlled laboratory, but in classrooms, where there were bazillions of different microbes floating everywhere in the air and on surfaces. The plates always grew stuff that we didn't intend! I'm sure strep was there among the other bugs, but just the sheer number of things growing on plates even with the precautions that microbiologists use. Just lifting the lids for too long, or accidently touching the very tip of a needle against the lab bench, etc. Now, if you were to PURPOSELY inoculate a petri plate by touching an unwashed hand ever so briefly onto the growth medium in the dish, there would be, within half a day, colonies of bacteria of every color growing there! This helps me remember that it is SO EASY to get exposed! Now, the reaction to exposure is definitely not our imagination. As soon as a few pathogenic cells enter the mouth, or nasal membranes, the body is put on alert, and signals are sent by cells, and then immune cells are copied and sent out into the body's circulation. As soon as this happens, other signals are also sent out that cause inflammation. It doesn't take long for the cascade of effects to take place. There doesn't need to be an "infection" for there to be an immune response. Every time your body encounters pathogens (and sometimes when cells are NOT pathogenic) your immune cells, as well as other defense responses, are sent out "on patrol" to limit the number of potentially harmful invaders. The immune response keeps these invaders in check, but sometimes the negative effects happen too, especially in the case of chronic disease where an autoimmune response has been started. If there are already circulating immune cells that have targeted "self" cells (such as heart, joint, brain tissue), then an increase in immune response, triggered by a pathogen, may spill the bucket so to speak. It is an erroneous immune response that involves "mistaken identity." This is the whole issue of molecular mimicry- whereby for some reason, some in-coming cell surfaces look like the surfaces of cells of the body. Because antibodies target certain antigens, and those antigens resemble the surface of a brain cell, or whatever, those antibodies will accidentally work on the brain cell too. There is much known about this phenomenon with the m-proteins of certain bacteria and human tissue. Uhhhh..... does that help?

Oh, and I am very happy to hear that it helped your daughter so much! That makes me so happy. I hope that she knows she has been helped?

Thank you so much. It helps to read as many of these as possible to keep from losing my mind. I just talked with the office and they are working on it, but said ins. co. did NOT tell them that it "wasn't medical necessity," but that they want him to have home infusion. I don't really understand--- seems like home infusion would be a (H-E-double hockey sticks) of a lot more money then the clinic fees, but I don't know exactly how charges are broken down. The major amount billed was for "product" according to the hospital. How is the product going to be any less expensive? The other charges were negligible- the doc's fee (same as ov), and the IV administration itself- an amount not too terrible to pay out of pocket. A few hundred is all. I don't understand, but sounds like doc's people are working on it. If we DO get the go-ahead for in-home infusion, will it be okay to get a high dose (1.5g) at home?? Anyone else get a high dose at HOME?

Not that I'm really surprised, but irritated nonetheless. Anthem has denied further infusions (he was to get every 21 days). He had his first on Jan. 6, which he benefitted greatly from. He had low dose of 25g total. He was to get high dose tomorrow. I am crushed, as I have learned that his biggest remaining issue, trichotillomania, resolves with high dose infusion (although not our doc, Dr. K. was nice enough to communicate with me by e-mail very briefly). Charge was billed as "unspecified immune" but his doc is treating him for lack of pneumococcal response. I called insurance co. and the only info available is a tag that says "medically unnecessary." So, I prepare myself for the appeal process, as many of you have done, unless doc can talk some sense into the stupid reviewers. I'm ready to cry...

Best wishes for both your families! So happy it worked out well Browneyes!

Oh, are the groups under Pandas Foundation? Okay, I'll check. Thanks. I will empty my box, too!

I only know of one other family in my area with PANDAS, but I know there are more out there dealing with it, possibly unknowingly. How did you go about starting a group up? I am on the Central Coast, CA.

I know you were asking for "lasting" or long term resolution, but thought I would post anyway- My son had his first IVIG (low dose) on Jan. 6. By then, his disorted body image and all the obsessions/compulsion attached to it had gotten much worse, even scary. Also, in November, he developed a new OCD which involved having to re-read sentences. This worsened until just over a week ago, when he got "stuck" on letters, causing him to stutter aloud, when he had been reading silently! This was very scary too. However... As of last Friday, EVERYTHING IS GONE! He HAD been asking me dozens and dozens of times per day if he was fat, if the food he was eating would make him fat, if his clothes made him look fat, and he spent hours examining his arms, legs, neck, face, belly for "fat." He has been reading normally since Thursday or Friday- no re-reading! He himself told me that his problem was "fixed." This is exactly two weeks post IVIG #1!

The investigator who was doing most of the work in this area passed away, sadly, in 2007, taking much of her understanding and knowledge with her. That was M.S. Sokol. She was looking at the B cell marker, D8/17, a marker that pointed to a genetic predisposition for rheumatic fever. There are many papers published by her on PANDAS/infection triggered anorexia. Most are accessed only through subscription via Pubmed, but I have a paper or two downloaded that I will try to attach (the link) if I can figure it out. If you search Pubmed for Sokol, MS, you will see her papers on anorexia, infection triggered anorexia, and PANDAS anorexia. My son is in the later stage of PANDAS (he's 12, been ill since 2003) and has recently developed the distored body image that precedes the actual anorexia stage. It is a horrible OCD. The FANTASTIC news is that exactly two weeks after his first IVIG (low dose), like a switch had been flipped, this has miraculously disappeared! It began very strong in early November, worsened over the months, peaked in early January, and it just disappeared last weekend!

Hi Anneca, We are in CA too. Where you located? You can PM me if you want. I am glad you will be consulting with Dr. K. I also wanted to let you know that there are good docs treating PANDAS in CA... in case you didn't already learn that from this forum. We travel from Central CA to UCLA. Good luck with your phone consult! Mary

Wow, Brandy, so great to hear! Too bad about the family stuff, but hope there is healing there, as well.

This has been uncovered and posted a couple times here, but thanks for finding and posting again! Easy to forget a lot. Would you feel comfortable trying it for your child?

So sorry to hear... hope and pray it is shortlived.

Boy, this really hurts the cause. In summary, there was no signficant causal relationship found between exacerbations and GABHS infection. However, the authors do a good job of describing the shortcomings of, yet again, this study. They explain that the next study really needs to focus only on newly diagnosed cases of PANDAS and that the diagnostic criteria should be broadened. Also, this statement is nearly the most important in print: Although GABHS infections have been postulated as the main initial autoimmune response-inciting event contributing to the sudden onset of severe neuropsychiatric symptoms in a subgroup of patients, it is well documented that sudden OC and tic symptom onset or worsening can be triggered by other infectious agents (e.g., herpes simplex virus, varicella zoster virus, human immunodeficiency virus, Borrelia burgdorferi, Mycoplasma pneumoniae, sinusitis, and the common cold). [24] , [52] , [53] , [54] , [55] , [56] , [57] , [58] It will be important for clinicians and scientists to continue to work together across the disciplines of pediatrics, family medicine, neurology, child and adolescent psychiatry, immunology, and microbiology to advance our knowledge and improve our understanding and care of these children regardless of the diagnostic label they carry.<BR style="mso-special-character: line-break"><BR style="mso-special-character: line-break">