bronxmom2

Dr. T.'s theory is that PANDAS is essentially a condition of low brain histamine (which in turn causes an excess of dopamine, norepinephrine, and serotonin)... so it would make sense that antihistamines would make things worse.

http://www.washingtonpost.com/national/health-science/medical-mystery-what-explained-second-graders-sudden-panic-and-obsessions/2011/09/06/gIQApqpdzK_story.html Did anyone write back to the guy in the comments section who posted his email address?

Hi-- I have also home schooled my academically advanced but wildly asynchronous PANDAS kids (who sounds just like yours... chaos is the WORST thing for him) for several years...I pulled him out of school at the beginning of grade 2 and now he is going into 4th. I just wanted to add that I believe for most states K is not mandatory, and therefore you would not have to file any of the required paperwork. Make things as easy for yourself as possible. NY requires fairly extensive paperwork every year. Some states have an agreement with K12 and you can enroll for free plus get help from a teacher... NY has no such agreeement so we are on are own. Also, within the gifted world there is a theory of Overexcitabilities (OEs) which I have found useful for understanding my kid. Good luck.

Hi all, I haven't posted in a while but I still check in every few days. After several years of aggressive treatment (with PEX and multiple IVIGs) my son is OK but he is still not neurotypical. He is excitable, hyper, often defiant, and generally more difficult than other kids-- he never adjusts his behavior based on past mistakes. But he is also brilliant, empathic, and unusual in many ways that make me very proud of him. I am realizing I have come out of this thing with my faith in the institutions central to a "normal" childhood-- medicine, schools-- absolutely shattered. My 9yo PANDAS kids is home schooled and the very sight of a school group at a museum makes my blood run a little colder with fear, resentment.... a whole slew of negative, defensive emotions that leave me on edge. Home schooling is not easy, but school is a place for my kid to be exposed to illness, berated, punished, rejected and misunderstood. It was a horrible experience. Similarly, neither of my kids (I also have a 3yo) has been to the pediatrician in over a year and a half. When I thought I smelled strep on the little one's breath (I was right) I took him to the ER instead. The ER felt safer to me. The pediatrician's office is a dangerous microbe pit and a source of dangerous medical policies. Since the 3 yo is now not vaccinated and has no record of a relationship with a ped., it would appear I am drifting toward home schooling this one too... I have never been much of a joiner, so my participation in these things was always pretty tenuous. I was not super PTA mom or anything. But sometimes I feel like I am hunkering down into some kind of weird survivalist mode-- I am not sure if this is a rational response or a symptom of the PTSD many of us feel we grapple with, or some combination of the two... The dire economic and environmental news in the world does not help. What kind of a future do our kids face, anyway? We are going to need independent thinkers more than anything, and schools do not seem to be producing independent thinkers. By the way, I have communicated with Dr. T recently and he does indeed now view PANDAS as a condition of low brain histamine. He also believe it is far, far more common than anyone realizes.

Hey, my son's younger, he is 8. He's been getting IVIG regularly for almost a year and a half. I am doing one more next week (at 2gm/kg) and then I am just going to wait and see what happens. He is also depressed and impulsive. However the REALLY terrible problems we had, when he was totally out of control and couldn't be with other kids or be stimulated at all without going bananas, have subsided. He is OK. I was hoping for more recovery though. Maybe with time...

Hi all, After PEX and 6 high dose IVIGs and over two years on antibiotics, my son is doing OK. Not perfect, but OK. He seems to have one big problem from which all his other remaining problems stem: he does not learn from experience. Negative experience (getting yelled at, rejected by friends, kicked out of class) does not teach him to avoid making the same mistake again next time and positive experience (being kind and getting praised)does not lead him to repeat. I believe it all boils down to dopamine. His dopamine-based learning system doesn't work. The chemicals that are supposed to teach him by flooding his brain are haywire somehow. Has anyone ever found a supplement that can either suppress, stimulate, or simulate dopamine OR found a therapy that can help kids LEARN the stuff their brain chemicals are supposed to teach them naturally? He's like a kid who keeps sticking his hand in a fire because he can't feel any pain. Still gets injured, still gets burned but he can't remember to stop doing it.

A few days ago, I ran into my old psychoanalyst in the Duane Reade (only in NY!)... and told her briefly about PANDAS, which I knew would interest her-- after all spent several years scratching our heads over what was wrong with me. She also personally witnessed my remarkably "pregnancy cure." I want to send her a few good scholarly articles about PANDAS or post-infectious, autoimmune inflammation and mental illness. (Someone recently posted a good article from Science (I think), but I can't find it.) She is a very prominent and very open-minded analyst and nodded her head enthusiastically when I told her PANDAS could revolutionize the very idea of mental illness. It would be interesting to have her on our side. We should have a pinned PANDAS thread with articles and resources to share in getting the word out.

ds is also exactly 3/8 Norwegian! Also 1/4 Tongan (South Pacific). Rest is mutt.

Hi all, my 2 yo got sick over the weekend, brief fever, coughing, runny nose, hooded eyes. I would not have thought strep except... I could smell it on his breath. Finally took him to the ER this morning and sure enough, even I believed I was overreacting but...I was right. So now he's on antibiotics and I can only hope this is not the start of PANDAS for him. But the strange this is, my PANDAS kid has been behaving like an angel since his brother started feeling sick. He is calm, polite, considerate, a pleasure to be around. This is literally the best I have ever seen him. I remember noticing this before, when all this started... his behavior was always the best when he was actually sick. It's like... when the antibodies have an actual illness to attack, they leave his brain alone. I am bracing myself for the coming weeks, though...

This caught my eye because I had cholestasis with both my pregnancies. I thought it was my liver that wasn't working, not my kidneys, I honestly don't know if it's related to anything developmental. My PANDAS son is (or was) developmentally way ahead, my younger child is less verbal but OK.

Hey, sorry to highjack the post but how did you persuade Dr. B to do 2 grams rather than 1.5? Browneyesmom, we also had a bad result (and a huge flare-up) with lower-dose IVIG (1 gram); however, it has worked for other people in the long run.

I definitely had it and still have it-- I think many of the parents on here do, and it further complicates our ability to cope with and for our children. I had pneumonia as a baby (almost died), then chronic bronchitis, irrational feelings of guilt as a young child, then a bad case of mono as a teenager and finally mumps at age 17-- and at this time also extreme emotional problems that no one could explain (my family thought I was faking and I also thought I was faking and felt horribly guilty) (also terrible acne which certainly made the emotional pain and the OCD worse) and by age 19 I was in and our of psychiatric hospitals several times because I could not thinking about suicide. I had a full scholarship to NYU and continued to get straight As even while in and out of hospitals and unable to shake thoughts of suicide. Emmalilly-- In my twenties I did begin to feel better, though I was still emotionally hobbled, I functioned, I wrote several novels (which I am still proud of) and no longer caused embarrassment or inconvenience to my family. Pregnancy at age 31 cured me. I remained symptom-free-- HAPPY for the first time in my life-- until age 35 when strep hit my son. Now I am struggling again -- rages and obsessions etc-- though on some level it is nice to know that I was not faking it as a child! So perhaps we could advocate surrogate motherhood as a cure for young women??? (just a joke obviously...)

Amox seems to be useless for most PANDAS kids. For months my original pediatrician (who like yours claimed he was willing to help with PANDAS) insisted that amox was the only safe long term abx, even though I kept telling him that it wasn't working. I ditto the suggestion to take the kids to the ER. Eventually I took my son to the ER, reported a recurring strep infection, and got Omnicef. I found the ER doctors and nurses were better than the regular pediatricians, who have become really strangely conservative. Also the ER felt safer somehow, germ-wise, than the pediatrician's waiting room. I developed a bit of an ER habit after that. Any chance Dr. B would consult over the phone?

yes, we took this deduction last year... deducted Dr. L visit plus the hotels and mileage, and all the mileage back and forth multiple times to Dr. B's.

Good topic. On a related note, my son was covered Medicaid until he was 6 (I was a single mom working p/t with no benefits and a difficult child who seemed to need extra attention, so I thought this was a clever solution) and TWO WEEKS after I got married and was added to my husband's private health insurance, and we got a new, better pediatrician, new questions were asked and we discovered PANDAS. Coincidence? I never really noticed we were getting sub-par care on Medicaid, but we were. There was HUGE disparities in this country not only in who gets what treatments, but in who gets what diagnoses. Even with private insurance, $ is a huge concern for as it is for so many others obviously. There is no extra money in our budget and no way I could have paid for any of these treatments out of pocket. I have paid for two things: 1) the Cunningham test, which was only $200 at the time and 2) one visit with Dr. L ($800). I feel that from this $1000 investment, my son has gotten PEX and multiple IVIGs. I have probably been pretty pushy at times. I remember on my drive back from Dr. L's I felt like a total failure because I had "only" gotten a script for steroids when I felt in my heart that I needed to push for the bigger treatments, which is what I wound up doing, within weeks.

I believe that many of us moms also have PANDAS.

Do PANDAS kids also have lots of yeast like the vaccine damaged kids? At least one of the PANDAS specialists (Dr. L) has said that PANDAS kids have a curious immunity to yeast problems. I don't know if this is true, but my own son has been on full strength abx for 2 years and has never had a yeast problem, in fact probiotics seems to make him vaguely worse.

Be careful with dental work. Many on here have said it triggered episodes in their kids... because of bacteria getting released. I have seen this in my own son. I try to get him to scrub really well at home and will avoid the dentist until I'm sure he's healthier. Is the dental work something you can put off, use the resources for PANDAS instead?

Funny that we were talking about the same guy. It would be great if he would include PANDAS in the next edition of "Misdiagnosis."

Let us know how your communication with the gifted psychologist goes. I have also consulted with one of these experts-- Edward Amend, who wrote the book Dual Diagnosis and Misdiagnosis of gifted kids. He had worked with one other child with PANDAS and was interested. But I only had the one consult with him. I wonder if he's encountered any more. If I recall, the theory he suggested was something to do with the tendency for two rare traits to appear together. Therefore PANDAS (rare) was statistically more likely to appear with another rare trait (extreme giftedness)than would appear in the general population. But this doesn't quite resonate with me. I don't think PANDAS is actually rare. More likely... the giftedness only plays a role in the likelihood of being diagnosed.

I have two boards I check compulsively... this board and the Davidson gifted board. (Where lots of the kids seem to have many of the same issues.) (It's worth checking out.) My son is actually a "Davidson Young Scholar" meaning he scored >99.9 on both IQ and achievement testing. I am lucky enough to have two sets of scores, one from age 4 when (believe it or not) many many children in New York City are given the WPPSI in pursuit of a kindergarten seat, At age 4 my son scored >99.9. I had him tested again at age 6, when he had apparently lost his mind and I had not yet heard of PANDAS. All ###### was breaking lose. In fact, the achievement testing had to be suspended one day because he suddenly spiked a super-high fever and had to go to the ER with ...STREP. Interestingly, the tester noted that in the hour right before the fever spiked and the actual strep struck, ds suddenly started to perform much better, became more focused, calmer and more reasonable. It's right there in his psych eval! He described the "clouds parting." The testing at age 6, right in the middle of a huge exacerbation, was still >99.9. I am so glad to know this, because... I don't know how to say this... I will not give up on him. I am homeschooling him now, he cannot write or do mathematical computations like so many of our kids (In fact the other day he finally wrote a whole paragraph and I was THRILLED to see the margin drift that EAMom has discussed... until he wrote that paragraph I had never seen enough output to know if he had the margin drift or not) but I am still holding him accountable because I know his intelligence. I believe our childrens' intelligence will remain intact. I have to believe that. It will not be an ordinary route, but perhaps they will be stronger and smarter in the end (like Emerson) for having to invent their own course. All I know is I have to "believe" in my son's intelligence, and in fact I am somewhat obsessed with it.

A shout out from the Bronx, neighbor! good luck.

I think Dr. B will do the same blood work for adults that he does for children, and if he can document an immune problem will order IVIG.

Hi-- this question is mostly about me. I have been trying to clear an infection that was triggered by exposure to mold two months ago. I took two courses of augmentin, which seemed to work, but it came back as soon as I stopped. The third course of augmentin did not work at all... after two weeks I was getting gradually worse, I was horribly congested and my lungs ached and finally, when I woke up to a painful stiff neck (not to mention raging and a suicidal despair), I was terrified enough to call and request a different antibiotic. I was switched to Zith, 500mg first day then 250mg. Now it is 3 days later and I am totally fine. But I am nervous that 250 mg is not enough and it will start to creep back. It was prescribed by a dr who may not know about our immune system problems. Is 250 mg zith a strong enough dose? Or should I call again? And isn't this on-again-off-again abx schedule more dangerous than staying on the abx? This has been my main justification for leaving my son on treatment dose abx continually, because keeping IT suppressed permanently seems better than letting him get sick, then (partially) beating it down, then letting it creep back up again, etc. But perhaps I am not really understanding the effects of long-term antibiotics on the immune system...

Hi-- we see Dr. B, and as you may know his current protocol is IVIG every 8 weeks. I have seen the same pattern: two weeks of decline, a good period, then at about the 7-8 week period, a falling off. I have asked him about this, and he says (or anyway this is what I understood him to say) that when we no longer see this falling off, we will hope the IVIG has done its job and stop doing it. We have done 4 IVIGs and with each one, the post-IVIG decline has gotten less drastic, the good period has felt more stable, and the falling-off has been more subtle. I removed my son from school last year, so reinfections is less of a factor for us (although he's not totally isolated, obviously) good luck-