Athena

Thank you very much for your reply and the information you shared. It is very interesting! ...Food for thought!

BTW: I never gave ibuprofen at the same time as prednisone, but I did give my DS7 ibuprofen twice per day for several days beginning day 7 after the 5 day burst. He seemed so delicate and tired (but hungry!) that following week, the ibuprofen seemed to relax him.

Thanks for clarifying/correcting....I have no direct experience with SSRIs, so it is good to understand that they don't actually increase serotonin production. Complex stuff! I am curious to understand more about things like "dopamine in the blood" vs. "dopamine in the brain." What prompted you to do a neurotransmitters levels exam? Were results useful in treating/regulating any/certain of your daughter's symptoms? (I ask mostly because my son, who has many allergies, has always had ADD-like symptoms (worse with PANDAS, but probably not caused by PANDAS. I suspect that something in his blood chemistry is to blame, because I see changes in his focus and attention that correspond to my trial and error changes to his diet.) ......................... I know SSRI action is blocking the reuptake of serotonin that is available, they can't increase directly the amount of it. but I can be wrong.... that's why everything, supplements and food that can raise the serotonin levels can help I have to say we are doing the Yasko protocol, so certain amyno, certain supplements we have to avoid due to her genetics. for example we have to avoid taurine, be careful to take control abut taurine levels and add it only if it is very low....and so on finally, in the neurotrasmitters levels exam, even in organic acids profile, or in MAP TEST, ALL done in the urine, mydaughter show balance between neurotransmitters, so I think that these results do not reflect the real state of dopamine in brain, due to the presence of autoantibodies

Days 3, 4, and especially 5 for my ds7 were notable in that he was calm but delicate during most of each day, but then had a raging blowout once during each of these days. Evening day 5 was the worst ever...rage, hallucinations, contamination fears. Then, day 6 (prednisone ended day 5), he was dramatically improved. He was tired and seemed "drained" from the previous days' roller coaster ride, but he was himself, with no more outrageous PANDAS behaviors. We haven't seen any dramatic PANDAS symptoms since. That was 13 1/2 weeks ago.

I don't know if the problem is "too much dopamine" or "not enough serotonin." Too much dopamine may be associated with ADHD, anxiety, tics, etc. But when dopamine levels go up, I thought serotonin is supposed regulate the response. Too little serotonin may be associated with depression and OCD symptoms, sleep disorders and emotional disorders/moodiness. So if serontonin levels are low, dopamine can do its thing relatively unchecked. SSRIs generally aim to increase serotonin production. Tryptophan (bananas, whey protein, milk, eggs, carbohydrates like pasta, turkey) is an amino acid that helps the brain produce serotonin. Vitamins C and B6 apparently help with the tryptophan, too. When my son (who is on a similar diet to Joan Pandas Mom's chile) starts talking too much and paying attention too little, I usually take this to mean that he needs a banana and a glass of milk! He enjoys a glass of warmed milk before bed, and this seems to settle him down, too. We have never used SSRIs or dopamine inhibitors....always regulation through diet (+ some supplements) and physical activity. If it is not a problem of production but reception (as Buster suggested), then inhibited dopamine and/or serotonin receptors might show similar symptoms, but the treatment for receptor problems should probably be different. I guess this effort needs to focus on eliminating/not making more of the antibodies that bind to the receptors, and avoiding inflammation if that allows the antibodies to cross the BBB in the first place. Omega 3s and other dietary interventions may help with the inflammation part, too.

Dear Buster, When I researched PANDAS last December, I ended up putting journal articles into three separate piles: editorials/opinions, studies that compared PANDAS kids to kids with OCD or Tourettes, and studies that compared PANDAS kids to kids who got strep but not PANDAS. Those who presume PANDAS (and PITAND) must be rare probably start with the assumption that this is a special case of OCD or some other specific disorder. Each set of symptoms for a specific disorder presents a restricted range of possible PANDAS cases. Although I was stunned by my own child's presentation, I felt early on that his OCD, tics, neurological impairments, etc. were symptoms of PANDAS and not the other way around. If the starting point is 42 million kids, and 1 in 7 have an active strep infection at any point between Oct. and April ("strep season"), then 6 million kids have had strep at least once this school year. It seems reasonable that "less than 6 million kids" develop PANDAS each year. (PITAND is harder to estimate, since there seem to be so many different antigens involved here.) I'd guess that somewhere between 5% and not more than 20% of all strep cases develop into some type of PANDAS (300,000 to 1.2 million kids!). Of these, some kids may have only one episode before reaching puberty and maybe they don't ever have a noted exacerbation. Some kids may only develop ADD or tics or AN or OCD behaviors. And other health issues may make PANDAS really difficult to detect. So, conservatively, 300-500k "straightforward cases" that could be diagnosed this year sounds about right to me. That said, Sydenham's Chorea and Rheumatic Fever are relatively rare complications of strep. So perhaps the lower end of the range should be set at the rate for these strep-related illnesses. Does this help at all? Athena

Thank you for this thread link....I wonder if TracyRee's child ever did have another exacerbation. (...and I sure hope not!)

Well, occasionally he had a sore throat and fever, but more often just a rash on his face or a headache/stomach pains. Last year, very often his 11 year old sister would get strep and he would test positive, too. This April was the first time in a long time that anyone actually had a high fever and a red, sore throat. I tested myself and my 11 year to make sure we didn't also have strep. Negative. We will likely all get tested again early next week, just to be sure we are all clear. Maybe if a kid can get strep and not have PANDAS symptoms, then it was never really PANDAS in the first place. Maybe Nov., Dec., and Jan. were just a bad dream. I don't think so, though. I'm thinking either we kept the BBB closed just as he caught this case of strep and we treated the strep quickly, or possibly his immune system has recovered and relearned what to do with strep. Maybe both. ....Or maybe next week I'll have bad news about a new exacerbation!

Hmmmnn...We're pretty sure we were dealing with PANDAS. For example, he started with hand-washing and a severe facial tic. Another "classic" PANDAS symptom seemed to surface every day in November, so that by the beginning of Dec., my DS7 could not dress himself, brush his teeth, tolerate socks, long sleeves, or anything black. In a short period of time, his OCD symptoms were quite severe. His math scores in school went from 100% in Oct. to 79% at the end of Nov., and his handwriting deteriorated dramatically. In Nov., I didn't know anything about PANDAS, and his pediatrician first suggested a psychiatrist. Although I studied all I could get my hands on about OCD at that time, I had great reservations about beginning with a psychiatrist and I asked what else could we do....So we got that blood test done. Even though his December strep culture was negative, my son's pediatician gave me 8 days of azyth when the ASO titer came back so high. After one day, my son started wearing socks again. By day 6, all tics and notable OCD symptoms were gone. I could not believe that an antibiotic could make all that madness go away. We took him to a well-regarded pediatric OCD psychologist just after starting the abx, and she said that abx doesn't make traditional OCD remit, and that we were dealing with PANDAS. He was off the azyth for a week over Christmas, but on New Year's Eve he started to tic and ramp up again. We immediately resumed the azyth, and again the symptoms disappeared...until we all got strep mid-Jan. Over about 5 days, he started ticcing and hand-washing and having intermittant rages. He was still on the azyth, but we added prednisone. On "day 6" (after 5 days of prednisone), he came downstairs mid-morning, fully dressed, and asked for breakfast. He told me he was done with the OCD and "all that stuff"...and that was the end of that. Although I don't think he had post infectious encephalitis, I remember wondering if he was truly "autoimmune." I sent an email to Dr. Kovacevic in December to ask if anyone was ever "cured" by abx alone. He replied that this is possible, especially if the first episode is treated aggressively, but relatively rare. This response from Dr. K was the reason I requested that my son stay on azyth for at least a month. Although I realize the "A" stands for "autoimmune," maybe PANDAS doesn't start out as autoimmune, but the body learns to attack the basal ganglia only after repeated opportunities to do so.

I have just registered in this forum, but I have been reading it for what seems like a long time now. I have learned so much from everyone, and I've agonized over the stories of your children as I addressed the issues of my own. I joined the forum and am writing now because for the first time I have a question that I haven't seen addressed in the past year's threads: Although clearly PANDAS symptoms seem to surface for many reasons not associated with strep, has anyone's child "successfully" had strep without a PANDAS exacerbation? Here is my son's story: My DS7 was diagnosed with PANDAS in Dec. 09. He had repeated strep infections the prior school year (Oct. 08, Feb. 09, Mar 09, April 09, May 09), and these were always treated with 5 days of azyth. Then he presented with a strep-like rash on his face in mid-Oct 09, but this was treated only with an antibiotic creme. No strep test at that doc visit. The PANDAS symptoms began two weeks later in Nov 09. He developed tics, OCD, ADD, regressive behaviors, just about every symptom possible beginning in Nov. 09. In Dec. 09, his CBC and ASO blood test showed his ASO titer was almost 600 and that his neutrophils were low. He was put on azyth from Dec. 15 until Jan. 31 (except for one week during Christmas). In mid-Jan., we all caught strep in my household, and my DS7 had an asthma attack. He started an exacerbation, but 5 days of prednisone stopped it. Except for some ADD challenges, he has been symptom free since then (mid-January), and he has not been on abx since Jan. 31. A blood test in late January showed his ASO titer had declined to about 400 (still high, but moving in the right direction). I believe he would fit the "hyper-immune," Type 1 (or is it Type A?...From Dr. T's classification idea) PANDAS. That is, his immune system mounted a response to strep, but did not "stand down" once the infection was under control. Both a leading psychologist and a pediatric neurologist in the Phila. area stated that "his diagnosis is consistent with PANDAS." My son has several severe allergies (including peanuts, penciillin and cephalosporins) and asthma. Given such good remission of PANDAS symptoms, and also his abx allergies, his doctors and I agreed that prophylactic abx might not be such a good thing for us, as he is already so limited in what abx he can take. He has followed a fairly strict "anti-inflammatory" and immune-building diet since January....No articial sweeteners, food colors, or additives, almost no fried food, etc. He takes zinc, magnesium, and Omega-3 supplements, + a multi-vitamin and lots of fruits and veggies. He also eats yogurt and takes a pro-biotic every day. I give him ibuprofen any time he seems irritable (up to 2x per day). He takes zyrtec now due to tree pollen allergies. My own research as well as insight derived from this forum (esp., thank you Buster and Vickie and all you advanced members!) made me try whatever made sense to keep his BBB closed and build up his immune system, esp. regulatory T-cells. On April 1, he developed croup in the middle of the night. Negative strep test (rapid AND culture). His pediatrician gave him one steroid dose to open up his airway. On April 6, he came home from school with a high fever and a sore throat. On April 7, he tested postive for strep throat, and he has been on azyth again since then (400 mg per day for 14 days). So far, throughout the croup and the strep, he has had NO PANDAS symptoms. I expected he would start ticcing or washing his hands or stop wearing socks or something at the onset of a new strep infection. I expected that an exacerbation would follow any strep infection. Now I don't know what to expect. It's been 2 weeks, and I keep waiting for something. Yet, my DS7 seems fine. I will wait until next week (several days after stopping the abx) to take him for a strep culture to make sure it's all gone. The neurologist said that my DS7's illness may be "self-limiting," meaning he might not have an exacerbation again. Could this be true? Has anyone's PANDAS child ever had a case of strep that was NOT accompanied by a PANDAS exacerbation? How long after a strep infection before PANDAS typically recurs?