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tu4four -- I want to encourage you to approach your family's health as an autoimmune issue first. that does not mean you should not treat lyme but understand that the effect that lyme has on them is due to their auto-immune system and the way it functions. there are simple steps you can take in chaging diet and as much as possible of lifestyle. it's heartbreaking to read your post and I want to send you all the best wishes.

I am curious to hear if any of PANDAS NIH study participants are on this forum today. If you are, would you mind telling us how you child is doing now?

it's a tough one. I am responding just to bump you up so others can see the post again. If CDC is positive and they don't want to treat it, that is negligence and you should be able to find a dr to treat lyme somewhere. if you say where you are, perhaps someone can give you a concrete idea. other than that, you can tell drs what they need to hear to give you abx like high fever.

it all depends how obstinant they are. if they believe that your kid's behavior is a choice, hit them with the biggest arugment you have like, as previous posts suggest, 504.

qannie47 --whether it is too much or too little dopamine depends on your genes and mutations. that's why you want to do genetic analysis. but don't expect a magic bulet. it will only confirm all you have guessed so far. I think that it is very important not to do any sleep aid except meletonin (and serotonin in general) and to focus on general well being in order to improve sleep. good luck

i would suggest doing 23andMe genetic test and starting from there. given my genetic makeup, I had some luck with addressing COMT and CBS mutations. the goal here is a balance btw serotonin and dopamine. you don't mention 5-htp which is another thing you might try. start with very low doses. Ibuprofen is among other things a muscle relaxant. we sometime give a small dose to dd one hour before bed. other things to try are vitamin d and magnesium and niacin all of which should help with serotonin production. but, as I said, to know what is likely to work you need a genetic test.

So, do you leave your PANDAS child/children with a baby-sitter? how do you do it? We found it impossible. A year ago, we tried to train one that seemed mature but that did not work. If you did it, how did you do it? any other tricks?

Some time ago, I suggested that we should do very abbriviated case histories esp for kids who had improved. That would be the single most helpful resource for everyone on this forum and, of course, for the new memebers. few of us did it but the efford fizzled out. We can do it again and ask Chemer to include them among the pinned materials. Please consider it.

the reaction at the beginning of abx round is probably herxheimer. what you are seeing after that is, again probably, an improvement of symptoms. in our case, we had the same pattern, very gradual improvement over a long period of time (12 months) on abx. there is nothing quick with PANDAS and it is all up and down. has your ds been on abx only for a month? have you tried anything else?

My feeling is that the first thing that will go from the diagnosis of PANDAS is the sudden onset part. What is sudden is an exacerbation of symptoms following an infection. THat is what PANDAS shares with other auto-immune conditons. In principle, you have PANDAS but it is masked until it is no longer invisible. If one sibbling has it, it is prudent to think of child's behavior as more than just "stages" . you need also to think of it as an early sign of PANDAS that may or may not explode down the line. As a result, you may want to approach PANDAS as a condition rather than a disease. Perhaps, ds does not need abx at this point but he might need other less envasive treatment like methylation supplements, diet, and so on.

if you have a dr to order it, you can do it anywhere, even at home. the question is only of dosage. google services that do IVIG. It is a common procedure. what's difficult is to have it ordered and covered.

LDN is low dose naltrexon. It is used against many auto-immune conditions and I am wondering if anyone here has experience with it. It works by increasing (?) endorphyins. the latest study is here http://www.cortjohnson.org/blog/2013/02/12/successful-low-dose-naltrexone-fibromyalgia-trial-points-to-safe-low-cost-therapy-implications-for-chronic-fatigue-syndrome/ If PANDAS has an auto-immune component, regulating endorphyins could be helpful.

lfran -- my kids have normal copper and zinc and I cannot help you with that but here is what I found that might indirectly contribute to your problem. this is from Yasko's book page 158 "Molybdenum, EDTA, carnosine, and zinc can help balance copper/zinc ratios." if I understand what she says, low copper might be a function of something else like CBS mutation which causes low molybdenum levesl which in turn causes unbalence in copper/zinc.

qannie47 -- I mean to help when I ask this, what did you expect? I am sorry you are going through this and want to suggest a few things just in case you have not done them. First, if this is an auto-immune problem, there does not have to be a current infection. Auto-immune conditions only start with infection which sets a chain reaction in motion. then, all organism starts destroying itself. You may want to find a way to interrupt that reaction. IVIG was one way. But it is not the only way. You may want to continue with PANDAS drs like dr K and dr L. AND one good thing about auto-immune conditions is that YOU actually can do something about them and could potentially improve. So, did you go through all the basic hoops like diet change, 23andme, exercise (to the extent that it is possible), some form of CBT? Are you giving too many supplements or not adequate supplements? Is there mold/other triggers like alergies? I wish you all the best.

assuming that PANDAS is an autoimmune condition, you may want to try a diet. usually, people start gluten and dairy free. did you do genetic analysis? it can shed some light on specifically methylation which may in turn help you understand what supplements are not productive. We did not do IVIG and I would suggest you repost on PANDAS forum to get responses about that. From what I read, post-IVIG is not uniform. many have seen worsenning before an improvment. do repost.

I can comment on the last thing you say, indeed, when there is fever some PANDAS symtpoms lessen. The same phenomenon was initially observed with syphilis. if drs you are dealing with don't want to do blood tests, you may want to find those that do want. use the pneumonia to test for all inflammatory markers, say that you suspect that your child was bitten by a tic and do IGENEX Western Blot lyme test. you can also order Cunningham's test on the supposition that there is something wrong with your child's immune system. one thing to ask yourself is if tourettes and OCD run in your families as well as if you have auto-immune issues in the previous generations.

thanks, LLM. i was in the midst of doing my http://www.heartfixer.com/AMRI-Nutrigenomics.htm homework when I made my post. as you say, dd has all the bad mutations and I have hard time figuring out how they all work together. what one needs may be bad for another and vice versa. In a strange way, actually, some of her mutations may help deal with others like COMT and CBS. DS has the same, unfortunately. Behavior is a rollercoster, they go from one end to the other quite quickly. in one of the posts, you described your dd's getting ready and reaching paralysis when you remind her that she has only 10 minutes to the bus time, the same here. she has a lot of self-soothing behavior. your opinions are much appreciated. I may have a specific question a bit later, when I reach that stage of detail. SO far it is just one big mess.

got dd9's 23andMe results finally. she is not progressing from her 80% and I want to seek your advice what you would do with this particular combination of mutations. I know the basic Yasko's advice, start with CBS and address other mutations as you go. I want to see what worked for your kids for particular mutations and their combinations assuming they have the same or similar. thanks in advance, COMT V158M rs4680 AA +/+ COMT H62H rs4633 TT +/+ VDR Bsm rs1544410 CT +/- VDR Taq rs731236 AG +/- MAO-A R297R rs6323 TT +/+ MTHFR C677T rs1801133 AG +/- MTHFR A1298C rs1801131 GT +/- MTR A2756G rs1805087 AG +/- MTRR A66G rs1801394 AG +/- MTRR A664A rs1802059 AG +/- BHMT-02 rs567754 CT +/- BHMT-04 rs617219 AC +/- BHMT-08 rs651852 TT +/+ CBS C699T rs234706 AG +/- CBS A360A rs1801181 AG +/-

I have some doubts about the way symptoms are reported in this case. First, you say there are just tics and no other symptoms. but then you add that he is not sleeping well. that's two symptoms pointing to auto-immune issues. then you add another tic, which is a third symptom - tic, sleep, and change in tics. are there other symptoms, esp those easy to overlook like frequent urination. stomach- and head-aches? i would look for PANDAS dr or LLMD asap

in some instances, we can use the full name of the dr as in this case. so, who will be interviewed exactly?

mood and hyperactivity -- we are seeing both and while on abx. we are trying to deal with them through metyhlation and think that they are also related to dopamine regulation. NAC helps ds. dd goes through cycles when she has them and does not have them. you may want to try also diet, gluten and dairy free for a few months and see if that bring any change.

ask your husband what he would do if this were rheumatoid arthritis or heart damage caused by strep. if he would not object to the usual course of action, which is long term abx even when there is no ongoing infection, he has no reason to object to long term abx for PANDAS. you just need to establish that this is PANDAS. look at pinned materials, there are tests suggested there.

why is dr afraid? because there is a campaign to prescribe less abx. the assumption is that our current practice is creating super bugs and pcps are supposed to be gatekeepers. i am not sure that you can say with certainty that augmetin caused rages. there may be a coincidence btw augmetin and rages because of the effect that augmetin has or it may be a herxing

you do want to determine if there is an infection. again strep is not the only bug to test for, myco and lyme coinfections should be tested as well. your child's ticks could have improved for any number of reasons. there is no sure way to know, unfortuantely. You can know it the other way, when, for instance, you stop abx and tics come back. that'll be a more unambiguous sign. yes, B vitamins can help with some tics but they are a temporary help. if this is pandas/pans, you have a system wide problem which you will not be able to resolve with any one thing. most of us here try to stay away from psychiatric drugs for as long as we can. other than that, I think everything is a fair game or, rather, a fair tray. 123 PANDAS goes something like this: 1) anti-inflammatories and abx 2) diet and lifestyle 3) methylation

With our kids methylcobalamin B12 work like a magic wand. It worked for about 2 weeks. then it did not. We needed to correct the entire metyhlation pathway, which we have not done well yet. I will answer a different question as well: should I do a genetic test? Our answer is of course. but don't expect much. You can get the same info by trying this and that. ANd don't think that genetic test will add certainty. Science does not know how genes and mutations manifest themselves. Only when mutations correlate with symptoms can you figure out a PROBABLE causal link. so, do it because you can and do 23 and me and get all the info you possibly can. then, tinker with different supplements and get to know this thing (genes, how they work) little by little.