pr40

as far as I know, there are 2 types of IVIG, HD and the other one. THe other one is given in smaller doses and more frequently. You an ask your dr this question, will this be HD and if not why not? what's the advantage of the approach he is proposing over HD? etc. If I were in your situation, I would definitly do it. The risk here is the risk that comes with IVIG -- you should read about it.

pandas has sudden onset. at least that was the early theory. your August 2010 can be considered this sudden event. i am not sure what you mean by "progressive". PANDAS symptoms change over time for some kids. many cycle through symptoms. difference btw pandas and pans is in the trigger, if strep it is PANDAS, if not strep then PANS. PANS is also the more general category. what study is your ds in? NIH?

i would like to know effects of l-theanine and am writing only to bump your post up.

best advice I can give you is to read pinned materials and do a search of old posts with the same question. pandas parents need to learn what PANDAS is since, as you will see, you'll be directing your kid's care. information will be overwhelming at first. good luck

you don't have to say that abx is for PANDAS, you can say that they are there because of an infection. about abx and heart -- is there a relation? heart is a muscle and I've never heard that abx affects any of the muscles. the one issue I see with surgery is sedetion given that your dd might have auto-immune issues (which is how we normally introduce PANDAS).

we saw the same thing, first gradual improvment then set backs. it's been like that for a year now with ds. exacerbations are getting shorter and less intense, which is how I define progress. so, perhaps you are on the right track and it only takes time, a year or two.

we went through similar stuff with dd10. for this reason, we changed schools from public to small private and are hoping that she develops friendships that would last her through highschool. second thing we did, we tried to find other odd kids. dd did it instinctively, it seems.

just on the basic q you asked about diagnosis -- what other diagnosis would fit? your dd seems to still have very classical PANS caued by infection.

kcc -- would you mind elaborating on your post? what did help your son, if anything did? was dr G open to IVIG?

you could try a simple question by asking if her condition is auto-immune. do you have auto-immune condition in your family? does Ibuprofen descrease tics? etc. so, yes, find pandas dr, do tests, but also try to figure out what triggers tics.

post MTFHR results in a separate post and, I am sure, many will try to help you with those as well.

your are asking a tough question. Our kids were both much worse than your dd when we started them on abx. but on any given they, they may be better than your dd and we give them abx not knowing if they would get worse or not. so, that, kind of, calls for starting your dd on abx. but, do you understand why abx are given? why would you want your dd take them exactly?

just a different possibility: yes, it does sound like PANDAS but it does not have to be only PANDAS. It could be PANDAS and something else. Treating PANDAS might help you deal with whatever else is going on.

good neuro will test for lyme. besides, once you are in and PANDAS is accepted as a possibility, you can ask to be seen by other drs and seek second opinion. It is normal, in this day and age, to have a team from the same hospital working with you. I would start treatment asap. Augmentin, in my experience, is usually the first choice, Zythro the second -- our kids are on both. if a nuro is open to PANDAS, she is open to all sorts of auto-immune issues.

we have Harvard Pilgrim. HMO gave us quite a ride. I asked them to name one PANDAS specialist in network. finally they did pay, but our expensese were under 1k. then we had to get POS that allowed us to go out of network. that was, basically, the advice on the forum. In our experience, the higher primium of the POS plust the deductible was not worth it. others on the forum said that it was worth it for them. you may want to do reasearch of threads that are over a year old or start a new one on the kind of insurance you should have. Most insurances don't reimburse what they don't have to and that includes drs out of network.

if you are in CT, why not contact Yale Child Study Center and dr Lekhman? he was one of the two principlas in the NIH PANDas study. I would call them right away.

teachers need to be aware of the kind of difficulties our kids have. I tried to form a relationship with teachers and meet with them every two months to monitor dd10's progress. we did move schools, from public to montessori for this reason. I compared PANDAS to ADHD and they got that something was different with dd which was the point. Now, next step is to figure what works best for dd, when they can expect her to do work like other kids and when they cannot. Of course, this puts much pressure on teachers AND that is exactly why we moved to a private school where you can demand, if not expect, that. so, my advice is form a personal relation with teachers. try to explain to them what kind of behavior they can expect, what kind of difficulties your child is going through. and also don't expect your PANDAS child to have all As. that's an unrealistic expectation which puts too much pressure on the child and on you. ANd, conversly, if grades are your worry, you are lucky.

normally, with all auto-immune conditions you want to lower infammation. ibuprofen is the most common anti-inflammatory medication. I don't know exactly how lyme differs from an auto-immune conditions and if PANDAS should be treated with a steroidtaper when lyme is the causing infection -- you may want to start a separate topic on that question, which anti-infammatories to use for lyme. the gist of my post is that one thing that you can do right away is work on lowering infammation which can be done with Ibuprofen and also through diet, exercize, and so on.

like the other posts say, don't focus on the content but on the fact that your child has intrusive thoughts. i am surprised that LLMD is suggesting stopping abx. Personally, I would not do it. Instead, i would try anti-inflammatories like ibuprofen and steroid taper (if it is appropriate for lyme). are there conifections? yeast?

how is she on minerals? zinc, iron, magnesium, copper? molibdenum can help with detox. These would be round about ways, I know, but you did try all the direct routs and/or they were suggested in previous posts. are you giving too much of something?

here is a new therepy for RA. it's in some ways similar with PANDAS. I love it that trial and error led to the discovery: http://www.spyghana.com/40-new-areas-dna-increase-rheumatoid-arthritis/

as most here will testify, healing is a process not an event. we hope for a better quality of life despite life-long issues. not sure if the issues are going to be ocd or auto-immune or both, but getting our children where the THING does not define them, where they know how to cope, where they can have friends, partners, carreers, etc. I don't think, however, that they will ever want to have children and perpetuate this to the next generation. so, yes, healing is the extension of what you define in your post --- you can also call it not getting worse.

we'll be seeing kyle williams in late January. my fear is too that they would be pushing psych meds. if you say you have a crisis, my sense was that they would give your child pirority.

most of this discussion is way bayond me. However, there may be another thing going on with Singer's research, namely that he is trying to contest that PANDAS is auto-immune. I've been reading a bit about MS and there the trend is to show that it is not autoimmune. But they identify auto-immunity on what seem to me to be rather simple terms. Here is a quotation: "From most references gleaned in the literature, MS is boldly stated as an autoimmune disorder. However, the evidence for such a statement is weak and circumstantial. We have updated and revised criteria for determining whether a disease is autoimmune in nature [14]. The main criterion of a given autoimmune disease is that a precise autoantigen be present in all patients with the disease. Despite multiple attempts to identify various proteins, lipids, and gangliosides in myelin as potential MS antigens, none have been proven or confirmed" (http://www.hindawi.com/journals/ad/2012/969657/). So, what they are saying is that there are no autoantigens that they can identify. And so they see MS as an immune disase. If this is correct, for Singer's study it does not really matter if kids had PANDAS or not -- after all, we can not yet determine that -- but if he found auto-antibodies. the fact that he did not should tell us only that Singer could not find auto-antibodies in either Touretts or Pandas and nothing else.

Lipoic acid, biotin, vit c, mutltiple, fish oil. -- that's all? if it is something to do with nerves, you may want to include magnesium. then also either zinc or copper depending on what he might need. how about anti-inflamatories like oil leaf and cq10? perhaps others?