bronxmom2

oh, I appreciate your reaction. It burned me up too! But here is a doctor who at least believes in PANDAS (and takes an interest in it)-- I hesitate to go out looking for another doctor. The problem is he is not open minded in his approach to this disease-- it's a case of a little knowledge being a dangerous thing, if you know what I mean. We tend to get into these ridiculous arguments-- he stands for "the standards of medical proof" and I stand for "what I am observing and what other parents are observing"-- it's very frustrating!

Could the itchy bottom be perianal strep?

Hi, almost two months ago, my son had his tonsils and adenoids removed. I tried to be hopeful about the effect of this procedure, and at first he did seem much better. He took Cefidinir for about 3 weeks after the procedure, then switched to prophylactic amoxicillin, which made me very nervous since Amoxicillin had been completely ineffective in the past. But I let myself hope that removal of cryptic tonsils + amox would be enough to keep him stable. And at first it seemed OK. He did not immediately revert to his erratic behavior and he seemed, overall, healthier than before the T&A. But now, the last few weeks, his behavior is deteriorating again. The biggest thing now is extreme emotional volatility-- as well as general refusal (or inability) to do school work. And the impulsivity and restlessness are coming back. Last week the dr. checked his titers-- I think we all expected them to be down somewhat but they are completely unchanged since they were first checked in January. (just over 500) The doctor is now willing to give me a long-term course of Cefdinir and agrees that an infection must be lurking somewhere. Whenver I try to talk to this dr. about what I want to do-- when I mention IVIG for example-- we tend to get into arguments. He began one sentence with "As much as I respect moms who practice playground medicine..." I feel like I've got his attention now-- he puts a lot of store in these ASO numbers--- but how can I get him to take this one step farther and really treat my son???

My son sometimes has "accidents"-- seems to wait too long to go to the bathroom. I never would have thought to connect this to the PANDAS, though now that I see this...

I have also had this on my mind recently... and also don't seem to have enough brain power right now to read the medical studies. Kim, please do summarize these for us if you can! I have a one-year old who was due for vaccines today, but I asked to delay them. The dr. said, predictably, that there is no proof to link vaccinnes with any syndrome, including autism. OK, OK, OK, I said. PANDAS children have uncooperative immune systems, right? My theory is that, having one child with a rogue immune system, the odds of having another are high. This is enough to make me hesitate before stimulating the baby's immune system. The Science section of today's NYTimes had an article about the 1918 flu. It seemed to be deadliest in healthy young adults-- people with the strongest immune systems: "The reason may be that the immune system of a healthy person responds with too much force when it detects a new virus, filling the lungs with fluid... In 1918 there were reports of people dying within hours of developing symptoms. 'That doesn't happen because you have a particularly virulent flu. That happens because the whole body went bananas.' Also, my experience with PANDAS has changed the way I view the concept of medical "proof"-- since, after all, the NIH does not recommend antibiotics or T&A as treatment for PANDAS, but rather, for christsake, behavior therapy! I now believe the concept of medical "proof" is much too narrow.

I was speaking to a mother recently who claimed that probiotics really helped her son's behavior. I never thought of probiotics as linked to behavior-- just thought of it as a way to counteract the antibiotics' effect on the tummy-- but now I am more careful to make sure he gets the probiotics.

Hi, I am interested in this too-- I have a 1-year-old (in additional to my 6-yr-old with PANDAS) and I am now planning to delay his vaccines. My two kids are very different-- the 6-yr-old always seemed neurologically sensitive and the baby does not seem like that-- they have different fathers-- but I don't want to take any more unnecessary chances. (Doesn't Dr. K say this is mostly inherited from the mother anyway?) His one year appointment is Tuesday but until I have done more research I am going to delay any more vaccines. What vaccines do they usually get at a year? I am bracing myself for a big fight with the pediatrician about this.

Oh, and a few more things: -- my son (who has most of the things you describe about your daughter) does not have obvious tics either. -- I think you were lucky to have a nuerologist suggest PANDAS! You could try giving her ibuprofin every day(on the theory that PANDAS kids have brain inflamation) to see if that has a positive effect.

Hi Susan, This certainly sounds like it could be PANDAS. I have one question: have you ever noticed a behavioral improvement when she took antibiotics?

Chris, Would you mind sharing how much it cost and whether you were able to get insurance to cover any of it? Did you have to meet with Dr. K significantly before the IVIG, or were you able to just fly in and get right to business? I am hitting a wall here in NYC, his doctor thinks he is "cured" now that his tonsils are out-- my family members all think he is "fine", but he is NOT fine (his teacher just told me that he might not pass first grade)--I saw a pediatric neurologist who wondered aloud why I was wasting her time-- I honestly don't even know where to seek help next. I just we could just go to Dr. K, but we are totally broke. My mother could help, but she thinks I am inventing this. It's so frustrating! I feel like I have only half my son.

This is very interesting about the short term memory... I think all ds's cognitive problems and many behaviaor problems too boil down to this-- I've never thought he had fine motor problems. His long term memory is extremely sharp, he remembers every details from Odysseus, but he can't remember things like his phone number or address. It makes sense that any kind of written or drawn work requires information to be stored in short term memory... Is there any way to help kids strengthen short term memory? To make him more functional?

Thanks to you all. The lesson is definitely to back off and be most concerned about his physical and mental health. My husband would question whether it's in his best interest to let him get his way on this-- he still does not really grasp how much of this is PANDAS and totally beyond his control. Neither do I. Also, he took an IQ test/Achievement test right in the middle of the worst of his PANDAS, and the results were still very very high. He's growing as a reader and a thinker, but he's losing the concrete tasks. Or that's how it seems. Maybe it's all going and I just can't accept it. I know this questions has been asked so it's really just rhetorical, but... if their brains are injured, will they recover? Jena, has the homeschooling been a success?

Our main problem right now is my son's refusal to do school work. He has missed most of the last month of school and is way behind... though he is only 6, and it sounds a bit ridiculous for a 6-yr-old to be "behind" in school, he goes to an accelerated school and is, indeed, behind. He came home for spring break with a packet of work the teacher wanted me to do with him, and I waited until today and tried to gently, positively steer him toward doing some of it-- but he dug in his heels and refused, though at first he agreed to try it. This is work which really should be quite easy for him. In particular, he refuses to write-- he will not write anything. I don't think he can go back to the school if he continues to refuse to do his work. We always have huge fights about this, because it's hard for me to grasp that this is beyond his control. I want to pull him out of school and homeschool, but my husband is adamantly opposed, because then my son will "get his way" and also because our fights will get worse. Just wondering if anyone else has a similar experience.

I have no reason to believe our dentist will know any more than yours, who seems to have attributed it to causes that weren't there (ie your antibiotic use while pregnant)-- anyway I'll let you know. The yellow teeth are really bother my son-- I keep finding him in the bathroom examining them. It's such a bummer. I'm hoping the dentist can bleach them or something. He's depressed enough.

My son had BEAUTIFUL baby teeth, but the two adult teeth that have grown in are very discolored. They don't seem to have any enamel at all. I have been worried that this is PANDAS related. But he has NOT had a ton of antibiotics in his life... none before age 3, then a few courses every year for strep. The extensive antibiotics came only this year, AFTER the teeth grew in or anyway as they were growing in. So I have been wondering if the chronic systemic infection could have caused it? We are going to the dentist tomorrow.

I too feel really exhausted at the prospect of researching vaccines!! Should I just tell my ped. that I will vaccinate my infant son (don't want to start a fight), but want to delay the vaccinations? Up until now he has had his vaccinations when recommended, but I think at 1 year he's due for some big ones and I want to wait.

I have wondered the same thing-- I have a year-old baby and I think I'll delay vaccinations just in case.

Hi Lacy, I just wanted to say... how awful, I'm sorry you're going through this. I also can't help but wonder... and I know if might not be feasible for your family, but... do you think it would be easier for her if she took a break from school?

I grew up plagued by irrational feelings of overwhelming guilt and became a writer to cope with the intense psychological pain. I am also pretty tidy! My pandas son has had two full IQ tests (because of behavioral problems) and is profoundly gifted, so I was also very very interested when I read Dr. K's phenotype stuff.

yeah, as soon as I uttered the words "message board" I knew I was sunk..... ha! The thing is, and the reason we are so grateful to find other peoples' anecdotal evidence on a forum like this, is that there are so few real STUDIES about this-- it's not even RECOGNIZED in much of the medical community. I mean, the NIH does not even recommend T&A or antibiotics for this -- they recommend SSRIs and CBT, which as far as I can tell don't work AT ALL. There's something deeply screwy about the way the medical community approaches the concept of "proof." And you don't really understand this until you have a sick child. For now I'm going to finish the Cefdinir, switch the the Amox, and hope the deep-rooted strep was hiding in those tonsils and adenoids-- and try to believe he is better. My son is tired of feeling he is "sick" in some strange way he can't understand. But you can bet I'll be back in his office the instant his behavior changes.

Ugh, that went just the way I'd feared. He would not give me more Cefdinir and, now that the chronically infected, cryptic tonsils are out (source of the strep, as he says) he wants to see what happens if we stop the antibiotics or at most resume the prophylactic amoxicillin. I explained that the amoxicillin hadn't worked in the past against his strep and that my understanding was that many PANDAS kids have strep that is resistant to Amoxicillin. He said this was not true-- no strep is resistant to any penicillin-- but the reason the Amoxicillin hadn't worked before was that it hadn't reached the strep harbored in the cryptic tonsils, which the Cefdinir was better at reaching. Now that the tonsils/adenoids are out, any strep he is exposed to should be "surface" and the amoxicillin will work fine. All I could do was kind of stare at him and say, "but... but... the families on the message board say..." And you can imagine how that was received. I mean, what he is saying makes sense on some level-- I want to be optimistic that the T&A will help-- but I am terrified of watching my son disappear again and having to fight to get him back. When I expressed concern that my son suffers BRAIN DAMAGE every time this thing is allowed to flare, he said there is no evidence of permanent brain damage, and when the PANDAS symptoms disappear it's gone completely. He also asserted emphatically that IVIG might work temporarily, but the benefits of IVIG are, by definition, always temporary. When I tried to tell him about Dr. K and the families who claim that IVIG was a permanent solution that has saved their lives, he compared Dr. K. (though it was nothing personal, he knows nothing about the guy personally) with a snakeoil salesman and said he felt quite certain that the man was getting very rich on this. So I have one more week of Cefdinir, than I have to switch to prophylactic amoxicillin. Should I try to find a new pediatrician by next Friday? I know that if I try the amox, and his symptoms do indeed come back, I will have proven my point... but I am so nervous about taking this risK!

Hi searching, It would not have to be strep to trigger the behavior change-- trying looking up PITAND. I'm not sure what that stands for, but I know the original researchers into this believed it could be triggered by any illness, even a virus. Good luck.

Hey, I apologize in advance for the dumb question. I'm meeting my pediatrician tomorrow, and I'm bracing myself for a fight because in the 2 months since I saw him, I switched my son from the prophyaltic amoxicillin he prescribed back to the Cefdinir that works-- in the meantime I've managed to get other dr.s to prescribe Cefdinir because he had a T&A and saw several drs. in relation to that. But this is my main pediatrician; he is a good guy and I'm really hoping he can be our partner in fighting the PANDA The pediatrician says the Cefdinir is dangerous taken for more than a month or so because it is "too global." I'm afraid he'll be mad at me for switching-- though it was ABSOLUTELY NECESSARY-- and, if not mad, won't prescribe any more-- forcing me to go out hunting for a doctor who will. I have only a week of the Cefdinir left. I know many people here assert that the long-term abs, even the Cefdinir or azithromycin, represent no real health risk. I choose to believe you, but I don't quite understand why that is so. Can someone please explain in simple terms why these long-term global antibiotics are safe? Why does the dr. insist they are not? I'd like to be able to argue my case. Because I KNOW that if I allow him to go off the Cefdinir, it's all going to come back, and the T&A will have been in vain. Thanks!

This was really beautiful, I cried too. Thank you for doing this.

Mine got his teeth super early (3 months-- he had a mouthful by 10 months) but they are very late coming out. His two top teeth hung on for months, ridiculous-looking, dangling, partly askew little pearls. I have wondered if his teeth suddenly turning weird was related to PANDAS.