peglem

I'd go to the regular pediatrician and ask for a strep culture. If they won't do it, take him to urgent care and say he's complaining of a sore throat. Does he get frequent sinus infections? Are there any teeth coming in, or were there teeth coming in when this started getting really bad? Seems like that's about the age when kids are still losing teeth and new ones coming in.

antibiotics

Oh, yeah, you guys are reminding me of things my daughter does that have become such a normal part of our lives that we don't even realize anymore that is abnormal!

I've seen that reaction, but not the next morning. About 1/2 hour after dosing, my daughter has a huge, long rage. Then she falls asleep. Good question about alternatives for that with IVIG.

Has anybody gotten a positive swab on the home test kits? I looked on Amazon and some of the comments (there weren't many) said they got false negatives, but maybe because they didn't swab properly. The expensive one ($69-00), had 1 really great review, but I couldn't find out how many tests come with that one. A few years ago I bought one of those like SFmom showed. I used it @ 3 times, all negative. Then my daughter got into it and ruined it, so that's all I know.

So, his throat was never swabbed to check for strep? But, he had high ASO and/or AntiDnase titers? And your son was positive(or was it just high normal?) for Lyme but was not treated w/ antibiotics for that? I have a 15 year old daughter w/ autism. I firmly believe that autism is NOT a diagnosis, but a label for a set of symptoms. Those symptoms (I think, and her pediatrician agrees) have been caused by PANDAS. But, just from the autism standpoint, this: sounds to me like your son is in pain. How does he do with ibuprofin? What kind of compulsions does he have that are seen by others as stims? Does he have any tics or abnormal movements? Did dr. K put him on abx?

My very autistic daughter ( I think PANDAS is the cause of that by the way) cannot express herself even at age 15- makes people really hesitant to give her a diagnosis, other than autism. Autism seems to have this special vocabulary for OCD and tics that makes it harder to see. "Stims", need for sameness and routine, repetitive behaviors, and my favorite (@ her banging her head and biting her hands bloody) "she needs the input" Despite that, I think we need to make it as simple and clear as possible- w/ the internet, parents who are trying to figure this out will easily be able to find sites like this one that elaborate more. If you get too anecdotal it will not be acceptable to the medical community and rejected by NIMH. And though I suspect vaccines played a part in all this for my daughter- that seems to be a political hot spot that is guaranteed to make people not take you seriously. I don't want that debate to taint this issue. We can do talk about that here with each other and try to find research on it and what not- but it seems nothing says "kook" to the medical community more than someone questioning those sacred shots!!

Allie tested positive for strep almost all the time (there were negative tests, that correlated with symptom remission), even when on phrophylaxis. She seldom got a fever, sore throat, or any typical symptoms when she tested positive. This led 3 specialists to conclude that she was "just" a carrier. But, I thought this was impossible, since they seemed to believe this was benign, and clearly my daughter was having very negative behavioral responses. With explanations from here (once again, I have to thank Buster) I realized that carrier state is not necessarily benign. The big tip-off was this last major flair in September...she did get a fever and was ill (not sure on the sore throat) and that correlated with dental work and she is cutting 4 molars. Then it dawned on us....major exacerbations always happened with teething and dental events (minor ones happen all the time)...tissue damage brings out the actual infection! In defense of our taking so long to make the connection, exacerbations sapped everything out of us...we were not thinking clearly!

Further responses/commentaries should go here: http://www.latitudes.org/forums/index.php?showtopic=6128

Guess i should remind everyone that the reason we're doing this regimen is because we believe Allie is a carrier- dental work, teething, any oral tissue damage brings on PANDAS symptoms. We're trying to clear carriage.

I agree. We're all on the same side here.

Thought some of you might be interested in how this is working out for us. We started rifampin 1 dose/day+875mg augmentin 2x/day last wed. before Thanksgiving. The first 2-3 days: diarrhea and orange pee, but no behavioral improvements-perhaps even a bit worse due to tummy discomfort. I figured the diarrhea proved we were killing bacteria somewhere, anyway. Actually after the 1st day's mess, I started hitting the probiotics hard-1 dose/hour when she wasn't in school. By day 3, the diarrhea is gone. days 4-6: a bit of improvement in behavior, sleepy. reduction in nasal discharge, but not cleared up yet. day 7: Needed only 1 "basket hold" at school, noticeably improved mood- did not flick lights/fan off and on in dr.'s office. Signed for help, instead of freaking out when she needed computer help. day 8: much the same as day 7, except she is whimpering and whining when she uses the bathroom, which leads to discovery of a "private" rash. Treat rash with both bactrim and lotrimin (cover all bases)-she is clearly terrified of the ointments, but tries to cooperate because she knows she needs help. day 9 (today) Amazing day! Terrific at school, dr. visit for rash- completely cooperative, trip to store afterwards....OCD is still clearly present but the assocated anxiety is WAY down....maybe this is working? I have not seen a day as good as this in, well, a very very long time! She does have a yeast infection, and vag. was swabbed for a culture as well. Tomorrow is the last day of the rifampin, but will continue the augmentin at full dose for at least 21 days. Treating the yeast topically for now, will give diflucan on Saturday. Dr. said rifampin+diflucan is a nono. We'll see how she does over the weekend. If she gets worse, I'll call Monday and try to get the rifampin reinstated.

I love it! What do you think of these additions in bold:

I don't think it matters. If anything IVIG will help close the BBB if it is open by being so anti-inflammatory. There really is unlikely to be any significant flow across the BBB. I do think that it's worth considering a pred-burst before IVIG... I have no great reason why except that it's the protocol that Dr. K uses and, well, seems to work. Can't give you a paper on it, but I think the antibiotics, then if that doesn't work, pred, then if that has effect, IVIG or PEX, then continued prophylaxis -- seems the right course. Thanks, I really respect your opinion!

Oh, sorry Buster...not trying to quash anything...I AM interested in the research and better to know for sure. Just is scary sometimes. But I suppose if my daughter can force herself to let me drink from a coffee cup (these trigger anxiety for her!), than I can bloody well over look my comparatively small worries to find out what is going on. It was just my knee-jerk reaction! I'm fine, really. But, that other question....Best to try to close BBB before PEX/IVIG, or would open be better in that case? I'm not looking for a fersure answer here. I don't think anybody knows. But, you probably know more about what's going on here than anybody and I'd really like to hear you speculate on that. And please, continue sharing research, no matter what-that's very important.

Well, this gives me an ominous feeling. Overreacting too soon to not enough info probably. But the thought of Bcells churning out antibodies in my childs brain...gives me a feeling of dread! And if that is happening, how do you stop the little boogers? Which leads me to ask.... When you get IVIG or PEX, is it better to have the BBB opened or closed? AND I know MS is different, as it involves tissue destruction, but if this is happening in PANDAS, how likely is it that the neuronal receptors that are being activated and/or blocked by the antibodies are stimulating the immune system to produce those antibodies? I think I liked life better before I heard about this.

I don't think its a choice between PANDAS or development. I think PANDAS disrupts development.

I try to be careful not to give the doctor's name publicly- just call them by their specialty, and if somebody wants to know a name, use PM. That is just my preference tho, and I don't think it was inappropriate for you to vent on this forum.

To quote a section: Copy and paste what you want to quote, highlight it and select the little word bubble from the top of the reply box. Voila!

Yes, and this also sorta confirms that she had strep in infancy- we thought it was a rash from teething drool getting into her neck creases (wouldn't surprise me if the drool is what spread the strep to the neck crease, actually). This is important, because it is believed her autism symptoms started in infancy...not proof, but I don't buy the coincidence thing, either. 'Bout time I have a good week!

MythBuster! You just solved one of Allie's great medical mysteries!!!!!! That armpit rash that she had for years (would also frequent neck creases in infancy, crook of elbow and belly button) and that didn't go away no matter what the doctors said to rub on it (so must just be another one of those autistic allergies ) was intertrigo!!!! It did finally go away when she started profilactic abx. YOU ROCK, buster!

Not sure if you have seen this study- 4 cases of childhood onset, but not treated until adulthood PANDAS. They used plasmapheresis instead of IVIG, but you still might find it interesting: http://www.turkpsikiyatri.com/en/default.a...icle&id=592

Here's the thread from our immuno appt. last month http://www.latitudes.org/forums/index.php?...c=5835&st=0 We saw him again yesterday, I wanted to talk to him about his re-pneumovax recommend, but it never really came up because he started explaining his findings and why he doesn't think my daughter really has an immune deficiency- It DID make sense. He said although she has some low Ig #s, he feels that strep is really the only bacteria she seems to be having trouble with (true). He said it does look like she fits the profile for PANDAS. After we see Dr. Latimer, if she bestows the dx and recommends IVIG, he will do the IVIG for us!!!! My daughter's pediatrician has been talking w/ him....AND the immuno said something about he thought the pediatrician had somebody lined up that would do PEX for us, if that is the recommend. I hope he's not misunderstanding that- because we go to MD in January and making that trip only once would be great!

I think something like that really helps. The UHC site shows 1st off that IVIG is covered for immune deficiency, with at least one infection attributed to the deficiency. Right now, I'm trying to get approval from UHC for our upcoming Latimer visit (not til 1/8/10). I know she doesn't take insurance, but since we were referred to her by the rheumatologist who declined to treat her because he doesn't have the expertise, we may be able to get reimbursement under a "gap exception", since they don't have any closer, in network providers with the necessary expertise. Then my daughter has secondary insurance(state provided), APIPA, which is supposed to cover any additional expenses over what primary pays. The fun fact here, is that APIPA is a subsidiary of UHC! This is amazingly complicated, but I think we really have a good shot at getting this covered. They both say, though, that you have to show that there is not a in network provider who has the expertise to treat her....well golly, how in the world does one do that?

That's understandable. Here's what I think- The IVIG will help with the immune issues and the autoimmune issues. But if her normal development was disrupted, she will have to catch up in her development. Keeping her free of PANDAS disturbances will make this easier, obviously. You may be battling this for awhile, but your daughter is still young enough to bounce back. I have a 15yo daughter who has had PANDAS probably from infancy. She is severely autistic. We are pursuing PEX/IVIG. The severity of her symptoms makes it harder to find somebody who will offer treatment. I do not expect treatment to make her "normal", only give her a chance to improve with therapy (which she's had plenty of all her life.). She has made a few gains w/ therapy in the past, but they have been largely lost from PANDAS episodes.