pr40

what convinces me is that he was on mood stabilizers and they did not help much. anti-viral may have mood stabilizing properties but its most direct mechanism of action is that it is an anti-viral. why the author would go out of his way to say that this is not the case, I can explain only with a prevalent dogma in the medical profession that says infection does not equal neurological and behavioral problems.

hrosenkrantz -- yes, I think that to be the case that valtrex does the same thing that abx do with bacteria and not that it is a mood stabilizer as the author of the article thinks. but I have only this opinion, no proof.

I read that article on Valtrex from the other post and would like to see if there are people here on the forum who had similar experience to what the article describes. I do want also to make one comment about that article: it ends up suggesting a new "exciting" possibility that valtrex is a mood stabilizer and that that is the mechanism of action in helping the PANS child. Personally, i think that is nonsense but then I am not a dr or a scientist.

and what if the case is not as sever as described here? is that not PANS then? "so many other problems that the child can barely function." -- barely function may mean not being able to go to school, not leaving room, etc. most kids on this forum, as far as I know, can function in some way.

do you happen to understand exactly what the difference btw encephalitis and pandas/pans is? is it just the intensity? when it gets to that stage described in the brain on fire, drs seem willing to call it encephalitis and do ivig. but when symptoms are tics and ocd, then, it is pandas? I could not find a better explanation -- I mean, given that encephalitis does not have a precise definition, if I understand that one correctly. is it that pandas is about a different part of the brain?

try to find a dr who would be willing to review the materials available through NIH and on the above website, and prescribe prophylactic abx.

i've been on this forum for several years and haven't read of any drs outside Europe mentioned. if you cannot find a pandas specialist, you do have other options like an open minded pediatrician, immunologist, rheumatologist, even neurologist. you can give them this resource https://www.pandasppn.org/ in many cases, especially with pedis, parents have to educate the dr about PANDAS. show that there is an NIH protocol on what to do when strep causes behavioral and neurological problems.

indeed, make sure to ask what treatment they provide BEFORE you go in.

on going gluten free -- this is the thing, if you are celiac you HAVE to do it or you are sick. If you are not celiac, then, I think, if you have neurological symptoms, you ought to try it. this because there is not test that can tell you that trying is NOT going to have an effect. and only trying it, you will know if it does or does not help. after going gluten free, we also went dairy and chocolate and nightshades free. we tried going back but had exacerbation right away on each. we will try them again in a few months. there are many things that negatively influence the immune system and create a "storm". getting rid of them temporarily weakens the storm .

This is quote "But as antibodies specific to tissues beyond the gut have come to light, some now suspect that the autoimmune firestorm ignited in the gut may descend on other organs, including the brain. This idea, which remains hypothetical, has gained traction during a time of progress in understanding autoimmune diseases of the central nervous system. At the Mayo Clinic in Rochester, Minn., a center of research on neurological autoimmunity, patients with autoimmune epilepsy, dementia and other recently described autoimmune disorders are frequently “cured” with immunotherapy. That usually involves some combination of steroidal immune-suppressants, intravenous immunoglobulin-G, which consists of antibodies from donors, and plasmapheresis, a procedure that removes antibodies from the blood." full article is at http://www.nytimes.com/2014/10/12/opinion/sunday/can-celiac-disease-affect-the-brain.html not that we did not know this already. but it is good to see it recognized in NYT. and it is good to see that they recognize that IVIG and other forms of immunotherapy help. my takeaway is that we, parents, should also focus on the fact that PANDAS/PANS is an auto-immune condition and try to do everything to minimize the "storm".

sacc B can often cause bad reaction. we can give it only once a week. if it is an autoimmune condition is he on special diet? if you are not doing that, it might be worth a try, both gluten and dairy free.

i don't see any probiotics on your list of medicine. I too would suggest change of protocol but perhaps after giving this one a bit more time. We had some luck with Ceftin. is it possible that your child has an autoimmune condition not only Lyme?

t -- desitin sometimes helps -- I forgot to add above, sorry

t -- yes, but then there could be other causes. in my case IBS or skin issue. I have both. my kids started taking zinc at the same time as I did but did not have the itch. if it is any form of inflammation, itch should react to the warm bath with baking soda positively. you have that other post with undigested food -- that sounds to me like clear indication of stomach problems. they can cause the itch. i don't know if you dealt with the same before, what I do is radically change diet to, basically, meat. I use Align probiotic -- it rebuilds flora, apparently, better than other probiotics. NYT had a good article on gluten earlier this week. they list sugars that contribute to IBS. so, again, i would guess that your kid might have a stomach and skin issue not yeast or parasites.

yeast is not the only reason for the itch. have you considered other possibilities? including various forms of inflammation and skin irritation? mild 20 minute long bath with baking soda might be helpful. zinc could be the cause also -- I started it a month ago and am having the same reaction. not sure how to explain it.

for him, we did see some tics off and on throughout the last two years which we count as his pans time. he would circle through them, changing them on weekly basis, running through whole gamut with voice, mouth, and arm movement. episodes were mild and did not last long. then, after we stopped abx and he had a cold two months later, his tics became more persistent, episodes longer and longer, and more frequent up to the point when they became constant. they also did not vary in any way. he was moving his arms as if he were doing some form of karate and blowing up his mouth even while he was talking. now, these arm and mouth tics are gone and no new ones appeared. he is entirely tic free. he does have other symptoms, mostly behavioral, that also include some thought patters and irritability but they are mild in comparison to what they were during the summer.

this is a report of what we personally noticed about our ds6 tics and antibiotics. Someone on the forum suggested that taking right abx will help with tics, and, in our case, this was correct. short history: we stopped all abx in March, by early June, ds developed new tics with mouth and arms. they were very frequent and their episodes appeared throughout the day. In June, we reintroduced prophylactic Augmentin with some effect. In early September we started Ceftin 250mgx2 day, as well as Azithromycin 100mgx1 day. By mid September, both mouth and arm tics were almost completely gone. In mid September he started with a bad cold. We saw some mild tics come back after the first week of that cold. By, now, the second week, though he still has symptoms of a cold, all tics are again gone. Also in early September we introduced ferrous sulfate (iron) but we did not change anything else. I cannot say if abx help everyone with tics, only that they helped our son.

I cannot answer your question, i am sorry, but can offer a bit different way to think about your problem. stomach and sleep are connected. perhaps settling the stomach will help him with the sleep, too. I don't know what caused diarrhea, and can just speak in general terms: one way to start is with Align -- you can read online what makes that probiotic special. methylation help could also be beneficial for sleep. In our case, stopping dairy had a great effect. you might be doing this already.

stuff at dr. B's office can be off putting. Not sure why. just insist that you want to see dr B and try to make an apt with him for your child. The logic with blood tests is to rule out that your PANDAS child is reacting to somone else's germs at home. You can also say that you all will get tested with your regular drs. don't give up!

I don't know enough about vayarin to make a guess in your case and can only tell you what our experience was. we were on vayarin for 6 months. saw some results but nothing as dramatic and quick as you indicate. effect leveled of by the end of the summer and we stopped vayarin. we went to regular fish oil and did not see much change.

just on the impulse to stop all medicine: it is disappointing that all the medicine you kid is taking is not helping deal with depression. When we did it, I know now, we did it out of anger and despair, which is not a very good reason. If you don't have a medically sound theory why you want to stop like that and what other strategy you want to implement, don't do it.

I haven't seen this kind of specific discussion of diet on this forum. I also find what is said here very useful and am posting it hoping you all might find it informative, too. the main topic is hypoglycemia and its influence on the brain and mood. http://www.autismweb.com/forum/viewtopic.php?p=157414

Can ibruprofen make tics worse? -- we did not see that with our children and I don't remember reading it on this forum. so, probably no. If school anxiety is causing tics, then is it pandas we are dealing with? -- possibly but why would anxiety cause tics? it could make them worse, perhaps, but CAUSE them, I don't think so. to me it seems that you are describing an exacerbation. we had some luck in switching abx., in place of upping the dose

you may want to do a search of this forum. there were numerous histories posted. such search will give you good idea how diverse and different pandas/pans can be, but also how similar some cases are. good luck

yes, he is back on abx and we'll be trying new one starting tomorrow. he was on calm for the most of the summer but we did not see any improvement in tics. he takes cq10 and olive leaf and fish oil and, sometimes, ibuprofen. we have seen no change in tics yet. thanks for your responses! i appreciate them very much.