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from todays NYT http://op-talk.blogs.nytimes.com/2014/11/26/what-if-were-wrong-about-depression/?_r=0

your post should be among the pinned materials. indeed, we need to learn how to be our kid's healthcare providers.

doses are prophiactic, that is, small. often, two abx are combined, though more orthodox PANDAS drs suggest one. valtrex is not an abx but an anti-viral. augmenting is the usual abx, as is zytromax. our kids were on that combo, which is the most usual combo (if I have that one correctly).(during our last meeting, our dr suggested going to one abx and his choice was zythro) I am not familiar with Biaxin -- it is for H pylori. you may want to make a separate post about its effectivness for PANS. your dr is firing on all guns. personally, i think this is a great approach. start big and then, after a few months, discontinue one and see. in the second phase, you can try to fine tune abx -- different abx have different effects

"Personally, I hate the cute acronyms and would prefer encephalitis or encephalopathy." indeed -- there is something idiotic about PANDAS acronym. I am wondering what they were thininking. everytime I have to say what my child has I have to role my eyes. it's like cancer were FLUFY, leukemia PUPPY. in some cases, like the one described in the book titled "brain on fire," they do identify the condition as encephalitis. I guess, then, symptoms are the difference btw PANDAS and encephalities.

The flow chart looks great I could show it to the paed. but I guess what I should really do is find a PANDAS or PANS specialist in the UK but I have no idea how to go about this. Any advice? yes -- there are several people on the list. do a search of the forum and make a post with that question in the heading to catch their attention.

what law suit? because he gave you a second penicilling shot? I doubt it. it must be something else. i am sorry you are having such difficulties finding the right dr. sometimes, it works to be more assertive. at other times, it helps to try to convince them -- like if you come with a prepared argument on what is usually done after rheumatic fever or with research showing that abx have anti-infammatory effect and that you should be taking abx because it will halp your auto-immune issues. you might have done all these things already, of course. if pANDAS taught me one thing it is that getting the right treamtent is a fight. good luck!

In case of NAC, we would see, first, improvement. It would last for several days, perhaps a week. then, we would see sudden worsenning, an exacerbation, that would stop right after we stop NAC or anything with sulphur. we would not see appearence of any new symptoms. it took me until we got 23andMe results back to figure out that it was sulphure. we tried NAC on four or five different ocassions and had the same pattern each time.

what is ASOT test? you may want to look at the tests that are recommended. you can find them among the pinned materials. any anti-body test is just a test about the presence of an anti-body. it is possible that organism did not create antibodies or that enough time had passed since they were created that they are undetectable. I personally don't believe in tics that just appear as I don't believe in anything that "just" is. in your place, I would have only one question: what kind of tactic I need to convince this dr to do the most responsible thing given the symptoms and check for PANDAS. there are, again, many tests that should be run and they are under the pinned materials. there is also NIH advice for drs how to deal with potential PANDAS/PANS cases. that too can be found if you do a search of this forum. perhaps I misunderstood your post: are you saying that your child's case is mild? if that is the case, perhaps there isn't much you can do beyond what you are doing allready (gf and df diet). perhaps just some anti-infammatory supplements? best of luck!

no, you should not ask your dr to do mthfr analysis. there is 23 and me, costs $99 and does not requrire prescription. we can't take NAC or anything sulphur because of our mutations. so, yes, in some cases, NAC though it would have some positive effects would also have negative ones.

about your diet: if gluten and dairy are a problem, you got to go off entirely. get nuts of all sorts. there is a lot of gluten and diery free munchies as well. look for them in a better stocked supermarket. there is no methyl-cobalaimin B12 on your list. serotonin and dopamin need to be in balance. if your dopamine is high, you may want to increase your serotonin somehow.

for us, the second day was horror, ticking like we never saw it before. then, we had three best weeks (up to that point), until a cold.

i would rephrase your question, does OCD come in the version you describe? or, in yet another way, are you sure you have identified all the symptoms? is the child slow? does she get lost getting dressed? is she particular with how she gets dressed? is she insisting that things be done this or that way? can she compromise? does she have memory problems? hording? (our dd had all these symptoms at the beginning of her PANDAS plus RLS.) one has to observe child very closely and to know what to look for. ocd comes in many flavors. look for compulsions and fixations.

"do you feel strongly that it's significant? And that the results are a useful contribution to treatment?? Thanks for the input! It's appreciated!" not sure what to say. we did it but our genetic info is so complicated that I don't know what to do with it. what helps with this, makes that worse. so we are stuck. on the other hand, you can't know in advance that you are not going to get a very useful insight. one, and I think the only, problem with them is that they don't give you the whole picture, only a snippet of your genetic information, and don't tell you that.

thanks, monarchcat. reading the beginning of your post, i was thinking just that -- perhaps we should have started much lower. we too cannot do B12 methylcobalamin bc of genetic issues. thanks! what is low for lithium? We have caps and, I guess, I can give him half of it. less than that would be very hard to measure.

you are right, this cannot be pandas bc pandas is caused by strep. perhaps you heard it wrong. PANS is the diagnosis when cause is anything other than strep. veltrex, anti-viral, seems to help some. you can do a search on it. of course, symptoms would increase under stress. and there is nothing in that fact to contradict the diagnosis of PANS. I don't get that part of your post where you say that your son is not bothered by his illness and will not comment on it. I hope others chime in.

C677T is "positive for 1 copy of mutation". I've been reading a bit about this, but if anyone would like to fill me in on their version of what this means really, I'd be interested!" this info alone does not tell you much, unfortunately. it says just that homocysteine is processed at a bit lower rate. you cannot determine how serious the problem is or who to do without knowing other genes in the methyilation pathway. 23andMe has a test fo $99

Study of sulforaphane's effect on AUTISM mentioned in one of recent post got me interested. Here is how they explain why they choose this anti-inflammatory in particular "Sulforaphane, which showed negligible toxicity, was selected because it upregulates genes that protect aerobic cells against oxidative stress, inflammation, and DNA-damage, all of which are prominent and possibly mechanistic characteristics of ASD." the same study also measured the effect of this supplement on mood, including irritability, lethargy, sterotypy, and hyperactivity -- which was positive across the board This makes me think that some PANDAS kids should also be able to benefit from the same. unfortunately for my kids, we don't seem to do well on sulfur. If there anyone who tried it, could you tell us what your results were? thanks!

eamom -- we started with the recommended dose, 120mg x2. ds was 6 and 50 pounds. we went to 120mg x1 on the third day and staid on it for 10 days. we did see one positive thing, ds did not cry but in every other aspect he became very hard to manage. it seemed like this was the precise opposite of what she he should have been taking. brand was: vitamin research products i don't regret trying, which i think tells you more than te

syphilis patients in later stages when brain was impacted had the same reaction. you can do a google search on that.

changing abx to ceftin is what worked for us. after we did it, rls virtually disappeared. dd has been taking magnesium citrate for a long time now which did not halp rls in a radical way. we did not try glycinate. thanks for the suggestion

because of those great news about LO, we tried it and ds had very bad experience with it. all of his symptoms intensified. we tried reducing the dose. and stopped within two weeks. intensification stopped.

have you looked at the chronic fatigue syndrome? our kids complain of fatigue often but they have nothing like what you describe. i assume sleep is not restorative. the are some new findings about cfs. scan, apparently, shows different white matter in the brain which means that it is becoming diagnosable.

jenniferg -- are you seeing improvement? can you tell us how your kids are reacting to this therapy? thanks!

there were some posts that people had luck with Duke, when cases were as bad as your daughter's. it would be worth a call.

here is a bit different take: you may want to get on their Point of Service kind of plan so that Kaiser would cover some part of your expenses and get yourself on a waiting list for a PANDAS/PANS dr in your area. But while you wait, your current dr may not be totally useless. Checking for excess copper is, well, one of the possible things that is causing or exacerbating your kid's problems. With PANDAS kids, it is usually more than one thing. Or, at any rate, over time your local dr may be convinced that your kid has pandas. I would also show her NIH advice for local drs. I think that you should make an effort since nothing beats having a local dr. It's simpler and cheaper and you need both when you have PANDAS/Pans kid.