pr40

nancy, can you please give us the title of this article? i cannot find it using the abstract.

or you can also give abx for exacerbations. abx also have anti-inflammatory properties. if you cannot get abx, perhaps other anti-inflammtory measures can be taken in addition to ibuprofen as LaurenK suggests, namely diet and supplements.

from your post it is not clear if your child has any psychiatric symptoms. he has tics but that's it, right? so, what exactly makes you think it is pandas? you may want to see the checklist, a part of pinned down material and do a self-assesment.

nitshel -- we did consider IVIG and are still considering it. but we'll do it only if the slow but steady improvement stops or if Dr b suggests that we should have it. in my understanding, for our kids IVIG would not be a magic bullet and we would likely have to do it more than once. this way, if they get much worse, we know what we are going to do. also, it would be very hard to find a dr to give them IVIG with present symptoms. our kids were probably born with lyme (dw has it too) and it is too late for quick fixes -- apparently, if you catch PANDAS early, IVIG could be a magic bullet for some organisms. in my understanding, kids that have PANDAS have something other in addition to bacterial infection wrong with them. there is a specific way their organism reacts, the open BBB, auto-immune issues, and so on. so, one IVIG would not -- as I understand -- correct all those kinds of problems.

for both ds and dd lyme tests were very similar to yours. dr b and igenex call it positive for lyme and treat it as lyme. the process is long and requires patience. we've been on abx for 10 months now and have seen only gradual change. some posts on this list indicate improvements in lyme cases after 2 years on abx. we are doing exactly as you are with very similar results. if there is a faster way, I would like to know about it. Pandas is caused by an autoimmune reaction and not directly by bacteria like strep. if there are other infections than those you checked already, the treatment would still be the same, just what you are doing right now. and yes, you can try to improve methylation if you have not done that already.

it was trintiybella's post that mentioned RLS, not T. Anna's. I am sorry I made a mistake.

after smaller weapons (abx, steroids, etc.) could not help and exacerbation continues. we are always on the verge. one day we think that we should do IVIG, then the exacerbation passes. but remember that IVIG is possibly only a temporary relief.

dr b told us that streptococcus in probiotic is not harmful to PANDAS/pans children. I think the reasons is something like this, this strep goes into the stomach which is a specific environment closed off from the rest of the body (except for leaky gut), there are several strands of strep, there is strep in the body normally, infection and response happen only under certain circumstances.

I've been thinking about T. Anna's kid's symptoms, specifically RLS because our dd has it too. Here is what I found: one study has 20% of Lyme documented patients also have RLS. and vice versa, Lyme is found in significant number of people suffering from RLS. While RLS is not always caused by Lyme bacteria, it can be. So, my conclusion is that if you have RLS, do Western Blot with Igenex just to make sure.

have you tried NAC? it functions like a mild SSRI for some people

we see dr B too. i am not sure how to get IVIG w/out going through dr B. I mean, you can get IVIG at many places but getting it covered is tricky. needs proper diagnosis. If you find a way, please post what you did. you can call Lekhman's office and explain your situation. Yale takes medicade if I remember correctly.

yes. we do. he is very cautious about IVIG. we moved to one of the other PANDAS drs. I am not sure if he can function as your primary PANDAS dr. you can ask. he may be better for severe cases. one thing he did not do for us is check other possible infections in addition to strep, like lyme. so, his approach seems to be limited. but he was also crucial in turning the tide on PANDAS and writing that PANDAS symptoms list. About insurance, no. they don't take any. but we did get reimbursed by Harvard Pilgrim. its around $700 for one visit. if you have specific question, feel free to ask

just to respond Nancy: I do say in the post that SSRIs treat symptoms. The opinion that SSRI can treat PANDAS is the one we got from three drs who believed in PANDAS but did so in a specific way and did not want to use abx unless there was an ongoing infection. For our kids, we are on the same page with you. We don't want to use SSRIs. But we do leave it open that perhaps in the future we might. I seem to recall that Sammy's treatment included and still includes some psych drugs. At any rate, we need more discussion of this issue how to treat psychiatric part of PANDAS, etc., especially in very young children.

on the nature of this discussion: we have this forum to, among other things, become better informed about our kids' conditions. In that light, I find the above exchange extremely valuable and want to restate its main issue which we can discuss as a separate topic. The issue is how to deal with the "psychiatric" part of PANDAS, PANS and lyme? Some drs want us to treat symptoms with various psychiatric medications which might be an option for older kids. The logic is that it helps them with symptoms, with, for instance, cytokines. BUT when it comes to 3, 4, 5, 6, 7 year olds, can the logic be the same? the question is not about the DR whose name was related to the original post, but about how we think about PANDAS. You can believe in it and treat it with SSRIs and you can believe in it and treat it first with long term abx.

can you tell us what insurance it is just in case someone here has a similar problem? I very much hope you win.

if I understand it correctly, your results point to a recent infection. -- If he had been bitten by a tick would the symptoms have hit him overnight or does it take some time? both. some overtime which are flue like and others overtime that are more like PANDAS symptoms and also include fatigue, joint pain etc. If he had Lyme could that have suppressed/messed up his immune system so that the strep then caused Pandas? -- PANDAS is a set of symptoms that are caused by bacterial infections. Lyme is also caused by bacterial infections. PANDAS names psychatric symptoms, Lyme includes those but has others. Both call for a different way of thinking other than one cause. Actually, the "cause" of both conditions is an auto-immune reaction. "Cure" involves helping body change the way it reacts to the bacteria which includes killing of that bacteria with abx and so on. In short, both Lyme and PANDAS are conditions that describe a state of the organism.

your experience confirms that there are only a few drs useful for us. it teaches us one more thing that we may need to decide what our kids need and go to the doctor we think will provide that. specialist opinion does not seem valuable at all. I am wondering just how N would explain depression and why he thinks that that diagnoses fits your DS better than PANDAS.

pr40 correct me if im wrong but i believe you were speaking about my son in particular that cant take abx and ibuprofren because of his gastritis issues. Just repeating what i was saying in my post but not saying it cant be taken together. --- I was just summing up the original post. yes, i am referring only to your son. I am sorry I was not more clear. We normally give the two together and the combo helps

so, it is not only bacteria that are transmitted by ticks but also at least one virus. here is a relevant article listing symptoms just in case you have similar http://www.livescience.com/38333-lonestar-ticks-cause-heartland-virus.html

---I'll have to look up by what you mean by change of diet. We have put her on a dairy-free (actually casein-free), gluten-free diet. She also needs to avoid eggs & strawberries. We also keep her off of artificial colors/flavors & preservatives as well as anything you don't know exactly what it is such as 'natural flavors'. She's been on this diet for 2 years, but, suspiciously, started going off it a bit around January of this year. yes, gluten, dairy, sugar is the trinity to start with. give a lot of probiotics at the same time. diet is not going to be a cure but can be a part of it. the goal is to help lower inflammation. some suggest even more restrictions like night-shades, egg whites, beans, and so on.

Question: do most of u do ongoing abx --- many kids are on long term abx or as needed --- what I hard was this: after you are on long term abx and don't have flare for two months, perhaps, you can stop abx and take them when needed --- and if as needed how do u decide when it's needed,( behavior, bloodwork, culture ). you learn overtime. it can be a combination of the three. but the rule of thumb is that we treat symptoms. there are no exact test to test for PANDAS (I don't know about Cunnigham's panel though) --- Also if I give my son as needed abx since he can't tolerate longterm abx how long would be sufficient? 1 or 2 courses? Would just like to know what other parents r doing in this situation. in our experience, we saw only very gradual improvement over many months. kids are on abx. some say, if you catch it early shorter course may be sufficient do all recommended tests, figure out what causes it (it could be more than one cause), and start treating one by one thing. recovery is long but it happens.

there is now cunnigham's test you can do http://pandasnetwork.org/testing_outcome/diagnostic-tests/ you may want to try steroids which should suppress inflammation. abx if you can find someone to prescribe it. some kids are helped with psych medicine but most comments on this forum seem to be negative radical change of diet is also something you can try on the logic that reducing infammation reduces PANDAS symptoms. post specific questions again on this forum

you cannot do abx and ibuprofen. you don't say why SSRI was prescribed. it cannot be because of peeing, right? have you thought of steroids and IVIG as well as radical change of diet?

just in case you have not read this article. we found it useful http://www.meandmydiabetes.com/2011/11/30/loren-cordain-autoimmune-disease-and-food-triggers/

when you give too much b12, niacin helps mop the surplus up. I want to join the chorus in suggesting that you need to start with much smaller doses. I would also suggest that you may want to start with mb12 alone. it is poorly absorbed and it is not easy to overdo it. we did manage do overdo it after giving it continuously for two weeks. and then add other supplements.