pr40

it depends what kind of mutation we are talking about. there are people who don't tolerate methylation agents well. my entire family is in that group.

why resists PANS diagnosis? symptoms fit, genes also. such diagnosis offers some hope and you know how do deal with it. what would be your alternative diagnosis? bi-polar?

Igenx has instructions on their site. these are the steps: you can order their kit but your dr has to sign it. local place draws blood and you send the kit to Igenx by Fedex -- kit provides all packing and mailing material.

i looked at the test. it seems really different than anything that is available. now, the question is if it works. The order says that patient needs to provide blood sample -- how did you do it exactly? did you go to a local lab? paid for blood to be drawn? mailed it by yourself? if you don't mind, take me through the process, please. thanks in advance.

I, too, understand the impulse problems, of course. We have the same issues, as well as hyper and silly and our children are on 100% gluten free diet for a year now. so, I'd suggest, it is not gluten that is causing the bloating. Unfortunately, I don't know how to deal with impulse control. Yeas might indeed be a part of the problem -- in which case Saccharomyces in small amounts might be helpful. this about gluten: you assume that going 95% gluten free is a change. It is not, unfortunately. This is because gluten in and of it self is not a problem even for celiac people. Problem is in how the organism reacts to gluten, that is, in the fact that organism overreacts to small amounts. Apparently, it overreacts to small amounts of gluten as it does to larger ones. Perhaps, you'd have to go to microscopic amounts not to get overreaction? but that is not what we are talking about in the case of your child.

bloating you describe is probably caused by a virus. the logic that going gluten free but cheating is not a good one -- he, simply, is not gluten free yet. it takes a long time not eating gluten to change the auto-immune mechanism. I'd say you have a more serious problem than gluten, a behavioral problem. there is that principle question does he want to get better?

After reading your post, I googled histamine and genetic mutation. this was among the first hits http://geneticgenie.org/blog/2013/01/31/mast-cell-activation-disorder-mcad-chronic-illness-and-its-role-in-methylation/

dr K and dr T are, apparently, easier to reach if you can travel. if abx helped, i would try the same again. based on our experience, don't go to Children's Hospital in Boston again.

our ds was almost 5 when we started both zythormax and augmentin. we saw no problems whatsoever. what we said to ourselves is that you can worry only about so many things. we also don't have heart problems on either side of the family -- only in old age.

dr K is, indeed, from Croatia. On this forum, there is one member, croatianmum from croatia. there is one member from Albania, and, if my memory serves me, there might have been someone from Italy.

as I understand, tests are not all that precise. if you see a consistent downward trend over a period of months, then, yes, abx are helping. since you are dealing with igg, why test every month? igg is already an info about a past infection.

you give OJ before sleep? to a child who tends to get anxious? logic? motrin is a muscle relaxant. it helps her relax. maybe you mean to thank only ladies, but you should know that some of us who post are that other gender.

we have the same problems. but I think what you are describing is not only an issue your child has but an issue that parent has too -- we share the same. the problem, I think, is that you are trying to discipline during a flare. don't. try to calm situation down. when it is calm, you can punish and talk about how he is supposed to behave. also, warn in advance -- when you do something to his room, don't wait for him to discover it on his own, but prepare him. when you are going to take things away, say what you are going to do, etc. set the rules, even write them down. we have rules written all over the house. I have a question for you: I agree this behavior could be OCD but I am not sure about the reasoning. how do you explain that rage is OCD? Our thinking is about fixations. Child gets fixated on something and cannot see anything else. get his mind off of it, and he is a changed man -- is that your logic, too?

what is a leg tic your child has? is it a movement? or is it a feeling? we have dd with rls, 1.5 mg melatonin helps with fewer side effects than clondine.

just to clarify: questions i found about amino acid test is how a urine test can check aminos in the brain. from what I read, there is no confirmation that it can or that it can't. and so there is no verification, meaning that the test cannot be called reliable.

as far as I know, there is no reliable test for amino acids. so, if the therapy works, it is because of a lucky guess. 23 and me -- results are very hard to interpret. also, having mutations does not seem to mean much, you don't know which one of them is, if I understand this one, "active." in practical terms, this means that you either find yasko-like dr or you experiment by taking one supplement at a time to figure out what works. then there is this amino acid treatment and methylation have considerable overlaps. i'd say, then, finding what works is most important -- not choosing between methylation and amino acids

have you tried 2 abx? our dd who has some similar symptoms, like nosebleeds, had to start second abx, augmenting was our first and zytro second, three months after the first. after she started augmenting things were improving very slowly, with two we saw a bump. I am more skeptical about testing that previous posters since in most cases solution is to do 2 abx. my point is, why test if results would not lead to a drastically different therapy. that said, I do think we should try to get rid of things that are not good for you like mold in your house.

just about swallowing pills: have you tried to give them with a spoonlfull of apple sauce? we hide pills so that they are not visible. Ds knows it is there and swallows it without a problem.

speaking from experience, we live in Portsmouth, nh, it is very hard to find anyone who knows PANDAS or wants to be educated. if you do find someone, please let us know. here is what we did: we first went to bouboulis in CT. it's 4 hours each way and they want you to visit 3 to 4 times a year, which is not exactly great but better than nothing. Hubbuch in watertown is only 1 hour away. she was a participant at PANDAS conference. I would think she is your best bet. She is a LLMD. but I have some reservations toward her as well. finally, Kyle Williams and Dr. Pasternack at Mass General but neither seems to believe in Lyme and they have a very narrow understanding of PANDAS -- OCD is its proper manifestation and if there is no obvious OCD it is not PANDAS. Good luck

make sure to check Lyme with Igenex. the regularity, if I understand this one correctly, suggests a bacterial cycle. I assume you saw suggested blood tests under the pinned materials.

we just started it three days ago. gave it to both kids. one in the morning. i know it says two, but didn't want to start with two.

I just want to join in your question about vayarin. It's very expensive and we are not seeing any effect. what effects did you see?

i wrote this before on the forum: are you 100%? I know my immune system is not and neither is my wife's. how many people are 100%? in case of ts, it is possible that there is some damage of basal ganglia that makes a case both pandas and ts at the same time. The question here would be if the damage would heal. at any rate, I am not sure I understand the significance of the possibilities you offer.

rowingmom, your signature line says "April 2013 - Weaned from abx treatment. Continue with Buhner herbs, ByronWhite, methylation/detox protocols, Terry Wahls gf/cf/sf diet. Minimizing EMF exposure." Could you tell me which herbs in particular did you use? I went to Buhner's site and was confused by the number of different treatments it suggests. thanks in advance!

dasu says, "interesting. ill add that to the order list. how long was the "effect did not last"?" well, we liked the effect so we started giving 1000mcg every day. had a great week. then, they got extremely hyper. we started giving mb12 once a week after that which had some positive effect. then, i discovered that they have very complicated genetic mutations that makes them not process well mb12. so, now we are dealing with methylation in a roundabout way.