pr40

you may want to post your original post again on the PANDAS forum. you are more likely to get read there.

this may not be what you are looking for: how we cope? no-how, some-how, who-knows. we scaled back. no far trips, no eating in restaurants, having friends who will tolerate us over, having absolutely no expectations, I see them as disabled in many, many ways. taking one day at a time, no, one hour at the time. I don't know about you, but no one is willing to help us -- actually, only people on this forum. either we can't explain what is going on in terms they can understand or our family members are just people who don't care much, but we got nothing even when we directly asked for help. so, yes, venting and ranting. wife started going to church then, we are really really really happy when they are fine

our dd presented similarly. she had tics, restless leg in her case. when we stopped dairy, they went away. it took us a year to figure that one. she was also on abx for 6 months at that point. if neuro does not believe in pandas, then she is a waste of time if you kid does have pandas. i'd do lyme with igenx. one caution, if your child does not have symptoms when not on dairy, why treat him? because of high titers? I would not say that your kid does not have PANDAS. he could. it may only be a very mild case. I would do a thorough blood test, all inflammation markers if you haven't done that one already, and start treating with supplements first. I do agree that step needs abx though. it can end up on his heart, joints, etc.

here too. unless there were sever traumas during pregnancy or after he was born, or extensive bipolar in your families, I would change drs. try food sensitivity. we saw some improvement after going gluten and dairy. but, in general, we too are seeing the kind of cycling that you describe with both of our kids.

I am going off of the post that has Dr. J in the title and am seeking some clarity on this one issue. If you had Band 41 positive on Igenex test, what abx or combination helped? I assume that many have the same question since this is one of the more important Bands. Perhaps we can start treads for other key brands and abx that helped.

perhaps augmentin is not working for him. our kids are on augmentin and zitromax. we saw more change when the second one was introduced.

Oregon teen's possible PANDAS is the opportunity to get attention to this condition. I don't mean that we should discuss more, we said enough and covered all the angles already. I do want to add that there could be other public images out there for PANDAS. I am not sure if any of these people have or had PANDAS but their symptoms do seem to fit http://abcnews.go.com/Entertainment/lena-dunham-stars-obsessive-compulsive-disorder/story?id=18513623#.UaXvMegvqB0

two more things to add. First, circles around eyes. Sometimes they are a sign of an allergy or sensitivity to food. When we stopped dairy, ds's circles went away. His aggressiveness lessened too. We haven't heard the word "kill" come out of his mouth, for instance. Second, in regards to your other question, could this be something else like a "real" psychiatric problem? Theoretically, it could. But if you child was not premature, if it was not traumatized psychologically or physically, if it was not poorly nourished, if you were not terribly sick during pregnancy, if you don't have serious mental problems in our families (both sides) -- in other words, if you are like most middle class Americans -- the chances of a "real" psychological disturbance is minimal. I am not saying this as an expert, of course, but it seems to me that what you are describing cannot BUT be PANDAS/PANS, lyme induced or not.

It seems that PANDAS has to have TWO priorities. Research is one of them. The other one is establishing PANDAS protocol so that children with psychiatric symptoms are REGULARLY tested for infections and auto-immune issues. the two, i guess, have to be pursued at the same time. You get more money when you show that there is more application for your findings.

i guess, with myco question will be if they jump again. In our experience, drs are helpful if you know what can be done next. Are you hoping for IVIG? In my understanding, pANDAS/PANS is reflects a disturbance of the entire system. If she has food sensitivities, you can suspect others. gluten, eggs, dairy are the usual ones. our kids responsed really well to methylcobalamin b12 (1000 mcg) and did so right away. I mean within hours. you may want to try that.

I hope someone else will respond to you soon. I can say only a few things. IGG is a measure of body's reaction to Myco. So, the levels tell you what happened in the past. We had low Vit D and it is really hard to get it to go up. I suspect that a roundabout way of dealing with methylation is necessary. your dd is already taking so many things and I am reluctant to suggest even more. Perhaps you may want to start not doing certain things, like going gluten or dairy free -- depending of what kind of sensitivities run in your family. good luck

abx are not the only thing to try. perhaps your have tried all these already, let me just mention them, improving methylation, figuring food sensitivities, other toxins like mold? Immune system can get out of whack and misreact to many different things.

so they are no pursing the question if psychiatric disorder have biological basis. then, a different question will have to be asked, if all psychiatric disorders have the same origin. then, they will have to ask what part is played by the immune system. If understand this at all, they are now there where Columbus was when he sailed West to find India. I.e., since is on the right track -- somewhere.

Just to repeat, if you put dd on abx (augmentin and zytromax), in a few months you will see if they make a difference. if they do, you'll know you are on the right track. In addition to what other posts suggest, check for food sensitivities. This is not ONE cause game, the entire immune system is affected and there is a range of things that are out of whack. I cannot say to anyone welcome to this site but finding this site was the moment of the beginning of the improvement for our kids.

I asked the same question perhaps 6 months ago. you may want to see the responses. There are a few things to try but even Explosive Child suggests that not all kids are ready for the program. Translated to PANDAS, when flaring, you cannot do much. And so we find ourselves precisely where you are between the intolerable behavior and not-being-able to do anything. One thing did help us, actually two. Methylation supplements and figuring out food sensitivities. That way we lessened the duration, the amount, and the intensity of rages and THEN we could make good use of Explosive Child techniques and therapy. This is not a leaner process by any means but cyclical. you get to do it again and again. in our case, dd is 4 years older and we try to physically separate them as much as we can.

Hi Kara, would you mind giving me the name of LLMD you saw in watertown? LLM mentioned it and i found your March post about Dr. H. in Watertown, MA. Does he treat children as well? were you satisfied? Does he know PANDAS? Thanks in advance, petar

we had a similar sudden amazing result with methylcobalamin b12. it calmed and focused both kids. unfortunately, the effect did not last for us. what did last is more modest positive effect in a smaller does -- we started at 1000mcg.

many thanks for your responses. I looked at pinned docs on lyme on this forum. they need to be updated. I guess I should e-mail Chemar. right, so, how do I find LLMD in my area? i am in New England, New Hampshire specifically.

we did igenex lyme test. dd had IGM (negative) 23-25 IND 39 IND 41 ++ IGG (positive) 31 IND 34 IND 39 + 41 ++ ds had IGM (negative) 18 + 31 IND 39 IND 41 + IGG (negative) 34 IND 39 IND 41 ++ if you have experience with Igenex lab tests, how would you interpret these results? I am new at this and they seem to me on the border. thanks in advance

our dd tried it at the beginning when we did not know it was PANDAS. on of the side effect is urination which kept waking her up so we stopped it. are happier with melatonin. otherwise clonadine was much better than what clonazepam a dr from Boston Children gave us. so, in all, not a terrible experience

retest of course. but remember also that you can have sore through from, say, pollen and many other things. the glands are perhaps more indicative but then they may not have yet gone down.

I was among those who did not understand why PANDAS and lyme forums have merged. Now, both of my kids have been diagnosed with lyme (igenex) and I am trying to figure out what this means exactly. could it be that lyme is their underlying condition? and PANDAS a name for some of their symptoms? (That would fit the picture.) As you can imagine I have tons of questions as I am, apparently, a newbie all of a sudden. We are even suspecting that lyme might be congenital. So, my first question: has anyone here gotten rid of lyme? What regiment did you follow?

we are facing a decision what to do next and find ourselves half way btw. the two opposite ends, stopping abx and doing IVIG. Kids are, at times, absolutely fine but then there are hours (not days) when they are not. then our house looks and sounds like a loony bin -- sorry, I don't have any other way to describe it. DD can be raging and crying inconsolably. DS can be throwing a tantrum or producing weird sounds. In all instances, they can move through these behaviors and we even see whole days without them. Neither has been sick recently and we can no longer track the relation between them being sick and PANDAS/PANS. As always, we would be very grateful for your insights and advice. (Signature below tells you what our kids are on.)

did you try NAC? it works along similar lines as SSRIs.

Pandas specialists have extremely long waiting lists. dr B may have a 6 -9 month wait now. so, get in line. why see PANDAS specialist? well, for medication and treatment like IVIG. In normal circumstances, duration of abx depends on how your kid reacts. Most on this forum went long term upwards of 6 months, some are on them for years. c-diff changes everything -- you may want to post with c-diff in the title to get attention from those who have experience with it.