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ds6 was doing well, so well that we discontinued abxs. after two months and a cold, everything went south and fast. major exacerbation early June, lasted for two months. last two weeks are somewhat better. since early June, he is having motor and verbal tics. he was recently tested for metals and mercury and led came high. we tried lypoic acid which made him much worse. then also nac, which too made him somewhat worse because, I think of sulfur, which he does not process well. I looked at old posts and did not find anything except 5-htp that might help with tics. and it does not help everyone. any advice? thanks in advance.

ds6 was doing well, so well that we discontinued abxs. after two months and a cold, everything went south and fast. major exacerbation early June, lasted for two months. last two weeks are somewhat better. since early June, he is having motor and verbal tics. he was recently tested for metals and mercury and led came high. we tried lypoic acid which made him much worse. then also nac, which too made him somewhat worse because, I think of sulfur, which he does not process well. I looked at old posts and did not find anything except 5-htp that might help with tics. and it does not help everyone. any advice? thanks in advance.

you might be describing two different problems. one is recall of words, the other is inability to translate a meaning of a sentence. for the first, p2p and biotin help me. I am not sure about the second.

just want to suggest a different take: why clean teeth at all? esp since your child is going to change most of them. if she is on abx, given that strep is among the major causes of caries, her mouth may not be all that full of bacteria. get her to rinse, if you must do something. but be careful for her not to swallow. i am from the third world and my teeth were not cleaned until I was in my thirties.

pinned materials on this forum offer great advice and suggest what tests to take. Have you looked at those? there are many from Florida on this forum, you may want to make another post with a specific question about drs taking non-children Pandas. also, a post on just non-children Pandas may give you more precise info on your options -- there are a few people on the forum in a similar situation to yours.

"but I want to be sure it will relieve my deppresion along with the ocd and agitation." no one can guarantee you this. have you tried other things that might help with depression like going gluten and casein free? it helps some people. "I have been on minocycline for about a year and feel really good on it" -- when you are feeling really good, is depression still there? are you afraid of IVIG? is that why you are hesitating to get it?

i don't follow your post well. what I do understand is that your pedi is sending you to a WRONG dr. If your kid has infections, what can a psychiatrist do for him? In your place, I would look for a dr in your area who beleives in PANDAS/PANS and is willing to treat with prophylactic abx. I would present NIH suggested protocol to pedi and ask for long term abx while you wait to see a PANDAS specialist. "asot 1200" is possibly aso titers of 1200, which indicates strep infection. look at other blood tests to do under pinned material and make a strategy -- you are probably going to be your child's only advocate.

I doubt the selfish possibility just because I don't think that it is a diagnostic category. Have you tried breaking up your task into parts? like, you have to do this and that before quarter hour passes? breaking time and process down should help you do things on time. I have a whole family, starting with my wife, doing the same thing. It's like living with the sheep -- they seem to be wondering aimlessly while time is ticking.

one way to think about what you are doing: you seem to be covering all the basis and I would think that there is little to add. What else could you discover that would require a radically different treatment, something you are not doing already? I see really nothing. Then, you can turn to what you are giving and ask if there is a side effect, like NAC has very positive effect on both of our kids but also very negative because of the sulfur. have you done any genetic testing?

You are very unfortunate that your kid had to see such poor doctors. no, all kids don't have the kind of results yours does AND the symptoms he has. in all, they tell you that your kid was sick in the past. They indicate possible PANDAS or PANS. If I were you, I would start using ibuprofen and get in line to find a better dr. See the kinds of tests under pinned materials on this site and if you did those just recently, post the results on this forum as they come. Otherwise, your try to make apt with a PANDAS/PANS specialist When you go to see your dr, go with an argument prepared saying that your kid should try long term abx, the protocol suggested by NIH for PANDAS/Pans, since psychotropic drugs did not help and he had strep etc. insist on sudden onset after the strep in 2011. get angry if you need to -- the point of prophylactic abx is to prevent future infections and give a break to immune system. abx also have some effect on histamine in the brain and some anti-inflammatory effect.

i'd say that it will be easier for him to control himself when he feels better. short of that, I think you are right that cursing is compulsive and therefore very hard for him to stop it. so, abx perhaps ibuprofen, i guess.

our ds has similar symptoms. He needs to have things "just right." He's can be controlling of his family's behavior and he wants us to do things just the way he desires, like that we walk up a certain side of the steps or do things in a certain order. He can get angry when these desires are not met. This is frustrating for us but does not seem at a clinical levels He has some separation anxiety, not awful, but more than most kids his age. he also hoards things, has some repetitive arm movement, and changes voice all the time. we consider that our child has PANS. he tested positive to myco and was given long term abx. he also has some IGG lyme bends positive. btw myco and lyme, we have long term abx. after a year and a half on abx, he had two great three month spells and we took him of the abx. at that point, he had a cold and symptoms returned with fury. we put him back on abx but symptoms are very much with us. I hope others chime in and help explain if the symptoms you mention add up to PANS or not.

not everyone can take folate as the first thing in attempt to improve methilation. do 23 and me and you'll have a bit better understanding of what you are up against. or you can do yasko's genetic analysis. it is more expensive but it comes with her advice. in my experience, there are very few other people who can advise you on methylation and, given your dd's reaction, you seem to have a complex case requiring the best of experts. At the same time, I want to ask, why did you start her on folate? you describe almost unbelievable improvement, what exactly do you think that folate would add to that? when there is too much folate, niacin may help. from what you say in your second message, it seems you do not go low and slow. that is the rule with anything regarding methylation. start with smallest possible doses and when they go well up it slowly if you need to.

you don't identify where you are. That info might help in figuring out if there are pandas drs close by. the situation, as you describe it, offers one possibility. even if PANDAS drs can't see you, they could refer you to someone in your area who might be able to start treating you for PANDAS. have you tried to do that? you have one additional option, something you might have tried already. The psychiatrist who suggested you have PANDAS and gave you zoloft. If you inform that person about NIH protocol, which is long term abx, not Zoloft, perhaps you would have some luck in getting him/her to start you on abx. good luck!

"We have done hair and blood tests in the past for metals and they were ALL normal. This current test was a urine challenge test using DMSA and then taking his urine over 6 hours. I am not sure how to take all three of these tests together and make an analysis." we did hair test and dr H recommended us, yesterday, to do urine challenge because, she said, it is most accurate. when she recommends chealator, I 'll tell you what her recommendation is.

I am interested to see if anyone is getting IVIG at dr B's office in CT. Last time we went a year ago, there were some difficulties and they were drastically cutting down the numbers of IVIG they perform. Are they back running? Is your IVIG covered by insurance? how did you negotiate the cost with dr B?

nemom -- do you have experience wtih Dr. H in portsmouth? does he understand pandas and other auto-immune neuropsychiatric conditions?

dr Hubbuch was Kara M's recommendation to us.

if your question is whether he should be vaccinated or get dr's note explaining that he has a compromised immune system, the latter is preferable, of course.

we live in nh, too. we go to dr hubbuch in watertown, ma. she is a family dr. , does not take insurance.

i read the opposite of what you say and you say that fermented food is supposedly more effective than probiotics. for gut flora, get several good probiotics and rotate them, including besides many strains of the acidophylus various bifidus. some kids don't do well on Saccharomyces, if yours does, thats another one to do. L-gutamine aids stomach lining, if I understand that one correctly. I am not sure what probiotics and l-glutamine have to do with glutamate.

Just did ds hair test for toxic and essential elements wtih DD, Doctor Data. High were lead, mercury, sodium, potassium, and lithium. Magnesium was low. now these results are extremely surprising for us. Lead is 2.8 micrograms per gram, mercury is 0.57 micrograms per gram. We filter our water and though we live in an old house, most old paint was stripped and painted over. We don't eat big fish that eats others and lives long(er). We believe our supplements come from a reputable provider -- Puritan Pride. Any ideas where lead and mercury might be coming from? and what to do? any experience with high lead and mercury? thanks in advance!

not doing preventive abx after a tic bite is like playing russian roulette. strictly speaking, odds are in your favor. but, then, perhaps, current understanding of lyme is not entirely correct. There is that HIV baby patient that is currently in the news. Her blood was tested over and over and over again and they could not find even a trace of HIV for three years. But, now, it appears that they did not know how or where to look. and the baby has HIV once again. and that is AIDS virus which is well known.

I think that previous posts overlooked that IGENX test came negative. Could you all comment on that? At any rate, in your place I would continue dr b's abx for a while, like six months, to see if there are any changes in symptoms. Current diagnostic tests are not great and they do not definitively prove anything. absence of symptoms or lessening does. good luck

glad to hear that you doing well and that the meeting with dr g was positive. question: how are you going to test for learning disabilities? we tested our ds6 at MGH and results were vague and unhelpful. my impression was that testing is extremely imprecise with borderline cases, if disability is not obvious, which seems to be the case, if I understand it correctly, with your son but, perhaps, I am wrong. is there a better and worse test?