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our kids don't respond well to turmeric. they are like your kid compound hetero for MTFHR. vit b metylcobalamin works for ds in very small doses but not for dd. cianocobalamin is not recommended. there is another one that you can get at Yasko's. Copper can be your problem -- there was a recent post with high copper kid, check it out. Zinc should balance it. vit d is hard to bring up. perhaps in some roundabout way depending on your kid's other mutations. we do well on general anti-inflamatories like fish oil - but we have COMT and CBS mutations.

Igenex test kit comes in mail. local lab draws blood and mails it FEDEX to Igenex lab. i am not sure if they do only US or foreign countries as well. what reason did your dr give for not doing Igenex? by the way, PANS is the name for PANDAS caused not by strep but by other bacteria. and then it is not either or, lyme or PANAS. it can be both.

consider this: one of your kids has a polen alergy and he is sneezing. after a year, the second kid starts sneezing at the same time. Now, it could be that the second kid caught a cold. But colds come with other symptoms which are easy to identify. My suggestion would be, again, not to jump the gun but to understand what an autoimmune issue is. It is a condition, not an illness you get over. Conditions wax and wein. If you have one child with PANDAS, you can easily have another with a similar or less serious presentation. On the other hand, mental illness does not seem to affect syblings -- if I understand that one correctly. so, my question would be to treat or not to treat. and I would treat given that early treatment with abx seems to have good results. Also, i don't see the down side of a month or two on abx. Then, once the kid is off abx, you will see if the symptoms come back

to answer you question: 1) I suspeceted PANDAS because no other explanation fit. 2) our kids were too young for mental ilness. 3) there was no history of it in either family, but a lot of auto-immune issues on both sides. 4) change of symptoms. 5) their abrupt appearance and disapparence. then, yes, blood tests.

did you look for recommended blood tests among the pinned materialis?

here is a theory based on my wife's behavior. She went through a denial for a year, then when she could not deny it anylonger she switched to saying "it is not that bad." But, in our case, I think that there is something wrong with my wife, too. She has high IGG lyme markers and some of the same behavioral issues as our children. She wasn't like that the first 15 years of our marriage. If I have an advice to give, it is this: you got to approach your spouse the way you do your chidlren. I don't mean as you would an infant, but as you woudl a person who needs some kind of help. Your spouse may need help in realizing what is going on or he might need more help than that. Or he may not want to be helped. I was lucky that in some way my wife realized that something was wrong with her and tried very hard to figure it out.

you said you want any suggestion so I am going to shoot in the dark: let's assume that his OCD is caused by low serotonin. try increasing it with 5-htp. you can also try other things that are likely to help with serotonin levels like eating protein, fat, fish oil. do you know his methylation mutations? they are useful as they can tell you what is likely to work with serotonin and dopamine. did you do basic blood test for vitamins and minerals and amino acids? they can be telling if there is an insuficiency. one thing that works with our kids is giving them a precise goal to work toward, like taking something away and saying that he'll have it if he takes a bath. I assume that he can understand why bath is a necessity. generally earning things seems to work for our kids because it focuses them away from how they feel and toward a specific end result. i am sorry you are going through this.

did you do basic analysis of vitamins and minerals? how about amino acids? then also, do you know what mutations you have on the methylation pathway? what is your diet? is it healthy? etc. There are few relatively simple and inexpensive things you can do and see if they help with your headacke. good luck

have you done comprehensive blood work on all your children for all usual triggers?

qannie47 -- can you coment on your child's sleep after you started HTP? was it OK before the supplement? is it better now? is he sleepy during the day? how about RLS (if RLS was current when you started)? thanks

did you presnt PANDAS cheklist to your Dr? be careful, many drs say they belive in PANDAs in they do in a sort of abstract way but don't want to treat it with abx unless there is an ongoing infection they can document. ANd they are really of limited use to you. So, you may want to ask not if someone belives in PANDAS, it is hard not to given how it presents itself, but how they treat it. From their response, you'll know if that is a right dr for you.

some dr suggestions, if you are in the NE as your Yale and Dr B contacts indicate, you may also want to try Dr. Pasternack at Mass General. He is open to the idea of PANDAS. MGH is also starting a PANDAS clinc -- not yet sure what that will be exactly. Lekhman's student is going to run it. Dr. Hubbuch in Watertown is another option. there are also other drs as you can see from the pinned material if you are not in NE As previous posts suggest, your kid has much in common with ours. Early history is identical to my dd9. I cannot say anything about the flue mist. But do have a question, can you be sure that there were no other infections at the same time?

you need to consult an immununologist who might know what she is talking about. Vaccine would only make your child make anti-bodies and anti-bodies are, if I understand how PANDAS works, the problem usually, not strep itself. then there is this also, can one be without strep? we are surrounded by various strep cultures, even probiotics have them. if your child is not making anti-bodies, I guess that to be a sign of a problem with the immune system, which, by the way, seems to be the one of the reasons insurance companies might approve IVIG for auto-immune condisons

Our kids did not have classic OCD or tics. there are other PANDAS symptoms that are also common, including frequent urination, regression, and separation anxity. Our kids cicled through many, many different symptoms. As thename suggests, PANDAS can describe any nuropsychological symptom that is triggered by an infection.

several older Pandas people have joined the forum in last few months. you may want to contact them. look around the forum. from what you say, it seems that your OCD was triggered by an infection. look at the pinned materialis and see recommended blood tests. do those. if you suspect that you have auto-immune issues, you can try supplements against inflamation starting with fish oil which is purified of mercury and things like that. you can also change your diet, gluten and casein free is what some start with. this forum is best for precise questions. you may want to contact one of Pandas drs (among the pinned material) and try to schedule an apt. you need someone very knowledgeable to guide you throgh the process and forum cannot do that. good luck

in my previous post I misspelled anatabloc.

you can do your entire genetic code analyzed by 23andMe for $99 plus shipping. it is not covered by insurance as far as i know

Ananatabloc is an alternative to ibuprofen.check if it can be given before surgery aren't you concerned that he has all these akes and pains in his joints? they can be symptom of a serious auto-immune condition.

explantion for side-effects I found says that they depend on dosing. presumably, small doses have minimal side-effects. Cunnigham's recent study mentioned in the other post cites this comparsion as note 14, about anti-dopaminaginic drugs. here is the site http://www.ncbi.nlm.nih.gov/pubmed/12131934 and the abstract: Comparison of the efficacy of carbamazepine, haloperidol and valproic acid in the treatment of children with Sydenham's chorea: clinical follow-up of 18 patients. Peña J, Mora E, Cardozo J, Molina O, Montiel C. SourceEscuela de Medicina, Facultad de Medicina, Universidad del Zulia, Maracaibo, Venezuela. jokar1@telcel.net.ve AbstractIn order to compare and contrast the efficacy of haloperidol, carbamazepine, and valproic acid in the treatment of Sydenham's chorea a prospective study including 18 cases of this disorder was undertaken. Age of patients ranged from 7 to 15 years. Ten children were female and 8 were male. All but one had generalized, either symmetric or asymmetric chorea. The patients were divided in three equal groups, and were given a standardized dose of each of the drugs built-up over a week. Following therapy, the six children receiving valproic acid showed remarkable improvement, without side effects. Five patients receiving carbamazepine showed improvement without side effects. Only three of the patients that received haloperidol improved. In the 4 cases that did not show clinical improvement after one week of treatment, therapy with valproic acid led to disappearance of the symptoms in a lapse that ranged from 4 to 7 days. Recurrence related to discontinuation of treatment was observed in two patients. In view of the present results we recommend valproic acid as the first choice drug to treat Sydenham chorea.

If I understand Cunnigham's new study titled "Dopamine Receptor Autoantibodies Correlate with Symptoms in Sydenham’s Chorea" there are two main findings, first that anti-D1R and anti-D2R, both antoimmune bodies, are elevated. Second is the implcation that like Syndeham's Chorea, eleveted autoantibodies may be helped with valproic acid. Did you use vaproic acid? what was your experience with it?

here is a summary that I put together. the question is now, as you will see, if anyone on the forum had experience with this valproic acid and if it worked. From page 5: "These antibody-targeted antigens namely, D1R and D2R, are key components in the regulation of the dopaminergic pathways which are considered to be the source of the chorea and behavioral symptoms. Consequently, both are successfully targeted with anti-dopaminergic drugs [14]." The research cited in the endnote 14 says, “In view of the present results we recommend valproic acid as the first choice drug to treat Sydenham chorea.” (“Comparison of the efficacy of carbamazepine, haloperidol and valproic acid in the treatment of children with Sydenham's chorea: clinical follow-up of 18 patients.”) Valproic acid, “Valproic acid (VPA, Valproate), an acidic chemical compound, has found clinical use as an anticonvulsant and mood-stabilizing drug, primarily in the treatment of epilepsy, bipolar disorder, and, less commonly, major depression. It is also used to treat migraine headaches. brand names Depakote, Depakote ER, Depakene, Depakene Crono (extended release in Spain), Depacon, Depakine, Valparin and Stavzor.”

A. I. Formula has turmeric. Turmeric is not tolerated by those who don't tolerate sulfur, those who have CBS and BHMT mutations. could it be that the Formula is helping with lyme but also making tics worse?

you may want to do some blood tests, auto-immune panel, strep, myco, lyme, etc. please see pinned material for the list of tests to do. PANDAS is an auto-immune condition, see if auto-immune conditions run in your families. Contac a PANDAS dr and get on a list. there were several people who recently joined with children with very similar TS symptoms. see what responses they got. good luck.

Both OCD and PANDAS run in families. look at yourself and previous generation, were there auto-immune disorders or OCD? that should give you some answers. another way to figure out if it is OCD or PANDAS is to start treating the condition as if it were infection triggered auto-immune disorder. If you get results in 6 months, you'll have a better understnading what is going on. if you are wrong and it is not PANDAS, you'll understand better your kid's organism.

remember, 23andMe will tell you the same thing that you already know because of your symptoms and your ancestors illnesses, only more precisely. In the best case, it might give you some whys. but, there is a way around it, you can assume that you have certain mutations and start the treatment with CBS. if you are wrong, you'll know perhaps right away. I am also not sure that you will have dramatic improvement right away. that may be an ulrealistic expectation. Also, metyhaltion alone, even if you do the right thing, may not give you that result. After all, we are not just genes. If we were, we would be no different that our syllblings and, well, flies. so, think about other things that might help you psychatric symptoms assuming that they are caused by an auto-immune disorder. is there anything in your enviroment to make them worse? food? life-style? and so on.