bronxmom2

Thanks. Antibiotics works the best in my son too, I guess, but it doesn't totally eliminate the hyperactivity, which is pretty marked, so I am constantly trying to get him to keep his body still, etc. He takes Omegas too. His focus is actually pretty good. It's the constant moving... He's only been on the right antibiotic for about a week and a half, maybe it will get better. I see lots of people here with multiple PANDAS kids, is that the norm? I have a baby-- different father, but I read this is inherited from the mother-- and I'm wondering if I should be worried/careful. Maybe I will not do all the vaccines?

I have sworn I would never never try ADHD meds, and in fact I have never accepted ADHD as an explanation for my son's strange behavior. Now I am coming to terms with the fact that the ADHD-stuff will be a big part of PANDAS... I am wondering if anyone here gives ADHD meds to their kids? I hear they make tics worse... I am still totally opposed to ADHD meds, but I sometimes wonder if I'm doing my son a huge disfavor, by not treating a condition which brings him lots of stress. Lately he seems to feel really guilty for behaviors that he cannot stop.

I was the single mom.

Hi, I also ditto about what everyone says about being very aggressive about the antiobiotics! I let my pediatrician talk me into switching him to Amoxicillin, then watched him fall apart before my eyes, and it was harder to get him back. now I'll travel to Mexico to get more Cefdinir if I have to! Also, mdmom, it's been suggested for years that my son had ADHD but I never quite believed it... though I kept searching for answers because I knew there was something wrong. I knew it! Anyway good luck to you! It's good to have an md on our side.

Hi TMom and EAMom, Well, I am just trying to be hopeful! One of the scariest parts of this whole thing is that your child may be suffering permanent brain damage. Like many people have posted, it was originally suggested my son had ADHD but this never added up... though I knew something was wrong... EAMom, I probably should not admit this, but it's just such a coincidence-- I think we were in the show you saw about kindergarten in NYC... not the smartest thing I ever did...

Hi, Those are great links, thanks. My son also has everything on that "stress in the writing system" checklist, I'm going to read it more carefully. I also think he does have dysgraphia of some type-- it seems like a very complicated disorder, though, lots of different problems could be contributing to the problem. My son's handwriting is a mess, true, and he does mix up letters and ignore capitalization rules, but the real problem seems to be anxiety provoked by an empty page. He simply panics. I think the school finally understands this. I had a meeting yesterday with the teacher and guidance counselor and told them I was going to pull him out and homeschool him because their type of curriculum was contributing to his anxiety and making him hate learning-- lots of worksheets and acceleration in all the areas where he struggles. (It's a gifted school.) They were completely taken aback and talked me into keeping him there. So we are going to try an onslaught of collective positivity. His artwork is also pretty terrible, but yesterday he made an extremely impressive model ship out of construction paper and scotch tape. Does anyone know if these academic problems improve with IVIG or over time if the PANDAS if brought under control?

Hi, I am wondering if anyone can recommend a good general source of info on PANDAS and how it might impact a child in school (anxiety, deterioration of skills, especially writing problems, fidgeting, behavior, etc.)-- I am meeting with my son's school tomorrow and at the very least I want them to understand what he's been going through. I am looking for something a little more authoritative than a website but more accessible than a scholarly journal. Maybe Dr. K's website, though it might be a little overwhelming to someone who knows nothing about PANDAS. I am going to write something myself, listing each of the symptoms he's experienced and how it impacts school for him, but if anyone knows of a good source I can use to corroborate what I am saying, I'd be much obliged. Thanks!

I am in the same place as you DCmom... Just discovered this thing and have become totally panicked. Just wanted to wish you luck. My plan is to get his tonsils/adenoids out asap, get this thing under control with antibiotics, and try to figure out how we can do IVIG. Because we all want our children completely restored! I think I read somewhere that you can't do IVIG until the infection is definitely cleared?

Does it seem to be one extreme or the other?

Hi again EAMom, My son (age6) has a similar pattern of academic strengths/weaknesses. His writing and math computation skills are very poor (by far the poorest in his class), but reading and reasoning skills are exceptionally strong-- probably the strongest in his class. He recently took the WIAT achievement test, and scored a grade equivalent >12.9 in reading, language skills, and math reasoning (>99.9% in all these) , but pretty much right on grade level (1st grade) for writing and math computation. Which must be frustrating! His handwriting, too, did not stand out as terribly bad in kindergarten but has not improved like the other kids'. Now there is an additional anxiety about writing anything-- he gets genuinely phobic when asked to write anything. In fact he is so anxious about school in general, and so poorly served by the curriculum, that I'm thinking of homeschooling him. (Plus I think there is a strep carrier in the class.) In particular his reading speed is amazing-- recently he was reading a Harry Potter book, and I was reading over his shoulder on the subway-- and he could read faster than me. My son took the WISC-IV IQ test a few months ago in the middle of our first bad PANDAS episode (the testing was being done at the insistence of his school because of his problems) (in fact he stumbled out of the WISC with a 103 fever, finally sick with strep after 2 months of increasingly bizarre behavior)-- anyway he scored a 145, which is exactly the same score he'd gotten two years earlier (for kindergarten admission in NYC)-- so the PANDAS had not changed his IQ score. I do think the Stanford Binet is a harder test for our kids-- zeroes right in on their weaknesses-- much more mathy. So I think that's probably the reason for your daughter's lower score on the SB. My son did not score as high on the SB either.

I am following this thread with interest because we are hoping to get my ds (6.5) in for a T&A next week. My hopes are not high that it will "cure" the PANDAS but I don't see much of a down side. The message I am getting here is that I should be adamant about continuing the antibiotics afterward.

Hmmm... mine was complaining one day at school (when his symptoms were bad) that everything had a slightly green tinge. At the time I assumed he was making this up.

Will this "Dr. K" everyone talks about give consultations over the phone, or work with local pediatricians? Is it worth going there to see him?-- my family lives in Wisconsin so maybe I could do that.

EAMom, Thanks, this is extremely useful information. It was definitely my instinct that the effects of this things are much more dangerous to my son than the immune problems caused by antibiotics. But the doctor does not seem to agree. And I thought this was a good doctor who accepted PANDAS and even has some other PANDAS patients whose parents I know... I actually have some of the Cefdinir left and have been secretly giving it him for the last two days-- to test my theory-- and it does not seem to be helping as much as it did before. Could he have developed resistance to it? Do any of these kids ever have SERIOUS treatment with heavy antiobiotics-- the kind they use to wipe out pneumonia in hospitals, etc.-- to wipe out intracellular infections once and for all? I know a mother whose kid had behavioral problems-- in the AS spectrum-- who then got pneumonia and wound up in the hospital. When he recovered from the pneumonia, his behavioral probs were also cured. Yes I am in NYC-- do you know any doctors you could recommend in NYC? Thanks...

Hi, I have two question for parents dealing with their kids' PANDAS: -- when do you think PANDAS first affected your child? For my child, I think it was just before 2 year. (At 6.5 he was just diagnosed.) -- is your child unusually precocious? Especially, was he/she an early talker? I have read that is the profile of PANDAS kids, which I find fascinating. My son spoke at 7months, and on recent IQ/achievement tests tested in the PG range... but in the mean time, he is flunking out of first grade. Thanks! I am very curious about the shared traits of PANDAS children.

Thanks, michele. He just adamantly says it is "too global"-- attacks too broad a spectrum of microbes and will suppress his immune system, I guess. Your dr. did not express any worries like this?

Hi, I am new to this forum and so happy to have found so much information! I discovered PANDAS this year because my 6yo ds's behavior grew increasingly erratic this fall (inattentive, impulsive, defiant, extremely fidgety)-- and he had 3 cases of strep over the same period. For the first two cases, he was given amoxicillin, which "cured" the strep symtpoms, but his behavior just kept getting more and more errastic-- for the third case, the doctors realized the amoxicillin had never wiped out the strep at all and put him on Cefdinir-- a more global antibiotic. On Cefdinir, his behavior immediately improved. I mean within hours. And his appearance improved-- his eyes were no longer glassy, his color improved. My son was back! And so I discovered PANDAS, in early December. I talked an ENT into giving me two more weeks of Cefdinir, so he took it for a total of a month, and he was fine. Still his bouncy, excitable self, but he was PRESENT. The teacher also noticed a sudden drastic improvement. As soon as he went off the Cefdinir, it all came back. Since he quickly developed another infection, the pediatrician gave us more Cefdinir (I was begging for it the way a drug addict would beg for herion), and also checked his antibodies level-- which were indeed elevated. My son took the Cefdinir for 10 days and then switched to a prophylactic Amoxicillin. Within hours, it was all back. The pediatrician will not give him more Cefdinir because it is too global. I hear that zithrmycin and/or augmentin might be better, do you guys have any other suggestions. What I feel is happening is that my son has a colonized, deep-rooted resistant infection that the Cefinir suppresses but does not eradicate. They are going to take out his tonsils-- maybe I'll get lucky and the tonsils/adenoids are the source of his infection-- but my hopes are not that high. I feel like I should be looking for an infectious disease specialist... I feel like my pediatrician is fed up with us. He just sort of shrugs when I tell him the Amoxicillin is not working. This thing is ripping our family apart... I'm sure you all know about that!