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Can someone, please, try to explain the alternative fever? I understand that fever is a sign of a strong organism. I don't follow the cytokine thing because "Cytokines are integral and implicated in all angles of the cascade resulting in the systemic inflammatory response syndrome and multi organ failure associated with this intra-abdominal catastrophe." So, how and why do cytokines stop PANDAS symptoms? (this happens to our ds5 too)

allie: could you please explain how we can file a complaint? OCR protects against discrimination. how can I connect poor treatment or wrong diagnosis my child got at CH to it? (my dd9 was actually treated there by a neurologist who put her on nurontin, if I remember that correctly.)

It might be my age but I just cannot follow posts written as if they were twits. I try to sound them out but it does not help much. As a specialized forum we use enough abbreviation (PANDAS, Dr. K, B, abx, and so on), we don't need new ones.

not sure what your question is. based on what I understand from your post, you are already on the right track by which I mean you have apts with dr Rao and are trying to see dr M. that's exactly what you should do. Apparently, PANDAS kids might have more than one trigger (not just strep) but also viruses and sometimes even food. As a parent you need to figure out what is specific to your child since these complex auto-immune issues are rather individual. You should look back into your family which might help you figure out what is going on.

If i understand you correctly, you don't want to or cannot give abx. How about anti-inflamatories like Ibuprofen and steroid taper? have you tried those?

Just want to run this by you all to see if I am interpreting correctly. Our ds5 does not normally drink milk but does some dairy (cheese, butter, yogurt, also probiotic with dairy). A week ago he had a cup of milk. Two days later we saw a major tantrum. It seemed a whole day was one long bout of crying. We got him of all dairy and in the next five days, he calmed down. Has anyone have experience like this? My thinking is that besides viruses and bacteria some foods could provoke autoimmune reaction like PANDAS. thoughts?

I know this may sound hypocritical coming from me, queen of supplements, but I'm actually trying to reduce the number of pills the kids take. They're getting to the tween age where I don't want them thinking there's a pill to cure every problem in the world. For the pills they do take, I try to hold up the vitamin C and say "this is the orange you won't eat. If you start eating oranges, this pill can go away. This Omega is the fish you won't eat. Start eating fish and this pill can go away." Trying to point out that a large portion of their pill load is to compensate for poor diet. There are days that I dish out the pills and the Rolling Stones song "Mother's Little Helper" goes thru my head "She goes running for shelter of her mother's little helper..." referring to Valium. I'm starting to get more sensitive to the subliminal message I might be sending. So "here, this is to help you sleep" worries me. Don't get me wrong - we do resort to it. And if my kid only took a few pills, I'd have less concern. But because DS has lyme and because DD can't take a multivitamin (due to MTHFR mutation, she takes separate vitamins for D, C, K, separate minerals etc), they take a lot of pills already. I worry about creating a mindset I never intended. So I'm trying to fix the sleep problem in a different way. Right. that's on my mind too. BUT, sleep is not the place to start. Sleep should be on top of our lists. If it does not go well, nothing else can. In my opinion, it's better to cut out everything else but the sleep aids like melatonin (but not like lunesta). Further, I would even argue that taking vitamins and minerals is fine since most are easily eliminated by the body if it cannot use them. I do want to mention milk. I don't remember if your dd does dairy or not. I read somewhere that dairy and milk specifically may cause sleep problems.

the article brings up an interesting possibility for PANDAS/PANS kids. Can they be desensitized to strep etc? is that what taking prophylactic abx for a long time makes possible?

our dd9 had hard time falling asleep last year when she was 8. we attributed it to restless leg. It would take her, at times, just as you describe until 10:30 or 11:00. She would sleep until 7am. Sleep is too complex to find a definitive solution. why not go with melatonin if it helps her fall asleep? It might not be the best quality sleep but then, hay, it is sleep. Her body might adjust to melatonin if you give it a chance. I assume, dd does a lot of physical activity. With melatonin (1.5mg) our dd9 falls asleep in 20 minutes and sleep from 9:15 to 7:15. We learned not to expect too much.

"he strep/bacteria will become resistant to the antibiotics and then what" I don't think it works that way. Bacteria become resistant over generations and many many different carriers, not in one person. Should they indeed become resistant,you would change abx. The purpose of abx is not only to kill existing bacteria but also to PREVENT NEW infections. In addition, abx seem to have anti-inflammatory effects.

brava! it is always so good to hear of kids improving. thank you for sharing

First this is not the TED talk. It couldn't be. there is nothing new or specific about it. Second, yes, microbes are a part of the PANDAS picture but what kind no one really knows. One can try and see on their kids what works. ABx help in that they kill many of them and you can start rebuilding the stomach flora with probiotics (and by kissing pigs, apparently). Third, it will be very hard for pharmaceutical companies to come up with "good" microbes that will not harm some.

if you suspect PANDAS, you can try to 1) do immune panel (blood work) 2) check for sensitivities (gluten, wheat, milk, corn, and so on -- diarrhea points in that direction) and low vitamins and minerals 3) start anti-inflamatory like ibuprofen and 4) antibiotics. from what you say, how sudden it was, it might be PANDAS. IVIG seems to be the best treatment but it is not a cure. good luck and do not hesitate to post again.

what I understand is that the question is not about lows and highs. when the process is as complex, the question is of balance. so, how do we establish balance exactly? going slowly is one way. addressing as many parts of the puzzle (kid's condition) as you can. as time passes, you get more experienced at it and, hopefully, kids get better.

Just want to me sure you know of the PANDAS scale. in case you don't, its posted on this site above the forum notes. you can perhaps show you dr that your kid meets the standards for the diagnosis.

trying to suppress tics and OCD behavior might be a problem, too. perhaps, the advice should be the precise opposite, don't try to suppress them but something like "ride along".

different PANDAS drs have differently long waiting lists. so, get in line. do start with abx and see if it makes a difference. much here is try and see if it works. IVIG is not a cure. for some kids, it might be the last help they need. did your dr order a complete immune panel or just strep? there are two kinds of PANDAS drs -- the old kind that still believes in one trigger (strep) and the new kind that recognizes that neuropsychiatric autoimmune problems can be cased by a variety of bacteria and viruses. Check what "school" your dr belongs to.

First we gave only methylcobalamin b12 and kids became hyper after a week. then we tried half a multivitamin pill from Seeking Health Optimal Multivitamin which has mb12 and methylfolate and few other things. Reaction to that pill was much better. As you said, when response is hyper, Niacin should help which is what we did. In your place, I would consider letting your son bring Niacin pill (50mg) to school. apparently, even a small amount of it should help mop-up the surplus methyl-folate and cobalamin if he gets hyper. question is if you saw any improvement on it. as I said, with our kids, it was almost instant.

hyperactivity seems to be one of the side-effects. some say that it goes away. we had the same but after a week and had to decrease from 1000mcg to 500mcg for a 60 pound 5 year old. it may also depend on some kind of "cycle" how your kid reacts. i.e. the fact that your ds was hyper once on b12 does not mean necessarily that he will be hyper again. did b12 help with any of ds's issue? with us, for both kids, change was immediate, almost unbelievable. they were just turned off. that lasted for about a five full days. Bliss. I am not entirely sure how to understand it.

1. there seem to be two kinds of kids with PANDAS. one with allergies and/or frequent infections. second kind to which our two kids belong does not get sick that often. in place of an illness, they get behavioral issues, anxiety, tics, and so on. 2.yes, PANDAS often comes with sensitivities, allergies, and issues like Celiac. One of our kids has the latter. 3. you are right. There is no cure for PANDAS. Some kids seem to get well enough from our IVIG. others require more. yet others require whole different life style as well. 4.right, but no, it's too complex for the existing science and too controversial. in a decade? there was some movement on strep in Israel where a scientist finally proved that rats can get OCD from strep. Hurray!

From your response to my message, I can tell you that if your DS does not have PANDAS neither do our kids. Just in case no one else mentioned it 1) Find PANDAS dr and get in line to see him/her 2) do an immune panel 3) test for heavy metals just to be sure (make sure there is no mold in your house) 4) start him on abx if you can 5) check if ibuprofen helps 6) see if there is a vitamin and mineral deficiency 7) do a genetic test -- i am no longer sure what test to suggest. it used to be MTHFR but then that mutation does not give you enough info and you'll be at a beginning of a process that might lead to his improvement. good luck!

I am sorry no one responded to your posting. If it is a sudden tic, yes, it can be PANDAS. I can PM you the bloodtests one of the PANDAS docs ordered for our kids. You can look up Utah PANDAS drs on Drs list at this forum. You are lucky that your DS's tics subsided.

to respond directly to LLM's comment. We are doing exactly what you are, namely we treat genetic mutation as best as we understand its correlation with the symptoms, we monitor the effects of supplements, and so on. BUT, there is at least this thing, when you start doing something, you cannot know what would have happened if you did not do it. The condition could have improved without the intervention. Further, improvement depends on criteria that are changeable. it is frustrating that science is not helping us much. most medical research is oriented toward solutions that work for everyone. solutions are taken in a rather simplistic manner as if organisms were not extremely complex and unique entities. and we, parents, are left to try and make some sense and figure out what works for our children. Thank God, we have this forum.

one thing about knowing your genetic mutations, actually two. First, mutation does not mean anything. or, better, science today does not know exactly what it means (if I understand that one correctly). you have to correlate it with symptoms and even then you won't be sure what the cause is. second, by the time our kids reach the age that they might get Parkinsons, it will be a different world. no point in worrying about that one today or even thinking about it, as far as I am concerned.

you mention other kids' diagnosis -- question is also of different generations and if you had autoimmune problems. It seems that most PANDAS kids had parents and grandparents with autoimmune issues. Given that there is no test for PANDAS, genetics of this sort becomes important.