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Given your child's symptoms, I amt surprised with what you give and how short the list is. perhaps I just don't know the drugs you are using. But no magnesium, no b12, no zinc? Have you tried those? How about a diet? NAC might be considered as well if it does not interfere with psych meds.

what lyme test did you do? IGENex seems most precise. I would do that just to make sure. Tics are the more persistent symptoms for most kids. I would hope for reduction of tics and them becoming less intrusive but, again, over a longer period of time. Nothing happens in three weeks in this world, as far as I know.

auto-immune reaction is a reaction not to inflammation as such but the one that follows when anti-bodies turn against the organism itself. as i understand it, this is the mechanism behind PANDAS and all other autoimmune diseases or conditions.

what's confusing to me is when a pediatrician treats her own child who has, to me obvious Pandas symptoms, the way that Kayser dr from S&S post does. She does not even want to think of alternative approaches. Why? I am not really sure. And it is not only insurance. It is fear. a deep fear that challenges the way this DR is as a person. On the other hand, I do want to say that we need to be open that PANDAS treatments we are pursuing as an auto-immune disease can be complemented with some psychiatric drugs. I know that my wife is benefiting from a low dose SSRI as are some other kids here. Remember that SSRIs do have some kind of anti-inflammatory effect. What we need are DRs who are willing to try and see what works and parents willing to try and see what works.

but if it is genetic, there could be some rules that are worth discovering. For instance, I know that psoriasis is much less frequent in African populations.

remember, it is not inflammation that hurts our kids but a reaction to it. it takes time for antibodies to stop causing damage. for our ds, steroid taper (not burst) brought first noticeable relief. it was not straight but we did see it for few days, then it was gone, then it came back again for a few weeks until next infection. for us exacerbations last long time, we see them ebb for a few days or hours depending on the period, then they come again. on abx, exacerbations have been losing intensity. That's what we call improvement, when they do not sink as low. are you doing other things, diet? supplements?, in my experience, you don't get over PANDAS without an approach that, well, acknowledges that these organisms just work very differently and need a lot of support.

T. Anna says this "Btw, listening to some archived Radio Pandas and heard that Dr.K said at some point that from over 800 patients the majority were Jewish, Italian and Celtic British (in that order). Anyone else have any info on that?" Our kids are Balkan (Italian in small part) plus Celtic mix.

the study says that another Canadian study reached different results in respect to AA. AA goes for boys and for a specific genetic type, Turkish or something. (I have some of those, too.) Which itself suggests that there are other genes which are involved. the reason they went for TNF is that it is implicated in other auto-immune conditions. There is a whole slew of such studies in fact for all sorts of things including cancers. Another implication of this study that was not mentioned is that we can treat PANDAS the way we treat rheumatoid arthritis by suppressing TNF. I am saying that that is a potential implication not an actual fact. Looked another way, this study is just making us run in circles. The real breakthrough would be that they identify mechanism underlying auto-immune conditions and then also identify genes that are involved.

can you understand this study? what is "AA polymorphism of −308 G/A polymorphism"? a gene mutation?

i think I heard that some kids got IVIG paid with "encephalitis" diagnosis. apparently, the diagnosis is only a description and so covers many conditions. but I haven't tried this myself.

dr hubbuch from watertown was recommended to us on this forum for lyme. she is a speaker at the NE PANDAS conference and seems to know about pandas. keep her in mind

for dd, heartburn, stomach ache, nausea all came as symptoms of PANDAS before abx. then, after we started abx, they would reoccur here and there until we went gluten and casein free. they haven't been back since. before that we also used pepcid gut is a very important part of PANDAS.

why do you think that there will be side-effects? I know that C-diff is an issue for some kids. is that what you are worried about? As I understand, it takes time to develop. Choice of abx seems right to me. there was a recent post on the same topic.

I read the article and it seems to me that it applies some conclusions from scientific papers in a rather general fashion. Example, eating cereals depletes you of minerals and vitamins esp. vitamin B. The study on which this claim is based, refers to a cereal only diet, say, in poor parts of India. If you eat only rice, you'll be deficient. BUT Western diet is not like that anymore. It is much more diverse. And so on. A different question, what is bifido probiotic? I googled it but could not figure out if it is the same creature as acidophilus bifidus. if it is, it should be possible to pickle with it. just a thought.

our dd had choreiform movements when walking. it got worse within weeks. one way to know if this is a tic is how it progresses. so, monitor it. in my experience, there is no one tic. they come in multiple kinds though perhaps not all at the same time.

so glad, too. can you describe where your child was prior to IVIG? so that we have some of the history. thanks

you may want to check other infections besides strep, mycoplasma and lyme first. the latter with an IGEnex test. if you find an ongoing infection, dr will not be able to say no to abx.

I'll try to respond in hope that others will chime in. why not ask the dr who diagnosed your son? just to be sure. perhaps, high Dnase indicates that you had strep at some point in the past. if you are not having any auto-immune symptoms, it might not be significant. but, in my experience, most of parents, especially mothers, of pandas children have autoimmune issues themselves. so, my question would be what other inflammation markers do you have? part of figuring out our children's conditions is figuring out our organisms and how they (don't) work.

this is just for the record that side effects of an anti-malaria drug called Lariam may have side effects that are very similar to PANDAS/PANS symptoms. Apparently, Lariam has this effect only to some people who take it and they can last for decades or even become permanent. Lariam was widely prescribed to USA military. the side effects of Lariam were a subject of op-ed this morning in NYT http://www.nytimes.com/2013/08/08/opinion/crazy-pills.html?_r=0

I know that you need understanding and support at this moment more than anything else. But, given that you are taking care of two sick people perhaps it would be useful to all of you to hear a contrary opinion. As I see it, my children and wife, all three of them are very much defined by the condition they have. I don't expect that condition to disappear anytime soon and we all are doing our best to acknowledge it, accept it, and try to improve it. given that these are auto-immune conditions, there is much that can be done with meds, through diet, life-style changes and supplements -- thought all these things we can do are not guaranteed to work or have lasting effects. All you can do requires a lot of discipline and clearly set goals and denial might be our worst enemy. Courage!

thanks, Mayzoo. I contacted my insurance, Harvard Piligrim and this is what I learned -- just in case someone else is looking for similar info. with POS, insurance covers 80% of out of network labwork.

I want to know approximate price before I order the panel for our kids. How much did your insurance cover if at all? we have Harvard Pilgrim, if you happen to have it to and did the panel, could you, please, comment?

if dd recovers so quickly, you are extremely lucky, i'd say. for most on this forum, recovery is years long. 90% is a success. recovery requires not only abx but also help with metyhlation and reduction of various inflammations through diet and life-style.

tpotter -- I try to google abbreviation people use on this forum. with ART that is impossible. so, what is ART?

are there any neurological problems with either of the kids? how about blood test? have you done immune panel? It's really hard to go on the info given. one thing that can be done with tics is steroid taper. if steroids make them worse, my understanding is that it is more likely to be Tourett's. if they go away temporarily, then likelyhood of PANDAS increases. I would suggest to start with immune panel -- info blood tests to do is pinned, if I remember correctly.