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I would still go to a dr and ask for two weeks of abx. Here in New England, normal procedure has changed and it might have in Ontario as well.

yes, most PANDAS drs in New England do not accept insurance. what we do is have "point of service" kind of plan and then submit bills for reimbursement after we meet a deductible. among other things, PANDAS is very expensive.

just on the question of how to distinguish "normal" from "Pandas" behavior. I thought a lot about this, and the only way I can describe it is that PANDAS is just the same as normal in the type of behavior, i.e. what kids do. But it is different in how it is done -- they do it compulsively. So, all kids are more likely to say "no" than "yes" when asked by their parents, but PANDAS kids say "no" compulsively. All kids get on all fours and imitate animal sounds, but PANDAS kids can do it again and again for days on end. I have hard time explain this even to my wife who keeps saying, look, all kids do x. Indeed, "normal" kids to it too but they don't do it compulsively, over and over again. the same with ODD -- O should stand not only for oppositional but also for obsessional (i.e., compulsive) when PANDAS kids are concerned. an OODD.

the idea behind the product sounds great but, because of the ingredients, the product itself may be lacking. The NEw Yorker article explains the choice of name, if you are interested. So, I guess, for the time being the verdict is "no" to this kind of food for our kids. thanks!

After I read the article in the New Yorker, I thought that perhaps soylent would be good as a part of diet of PANDAS/PANS children. We have not tasted it yet and I can identify two problems with it outright, no organic ingredients and contain soy. Do you have any experience with it? http://www.soylent.me/

I agree with other posters but, since you pedi did give you abx once, I would return and ask for another shot just to see if two week course would help him, this while you wait for an apt with LLMD and/or Pandas specialist. your child shares many symptoms with our two kids. you may want to think of a gluten, dairy free diet. and test him for food alergies.

There is Dr Hubbuch in Watertown, MA. She is LLMD and she is a family dr. she does not take insurance. I'd start with her, see if she can help you. MGH is different than Boston CHildren's where Justina was. MGH has PANDAS clinic and you may want to try there -- I think you are not going to have much luck with them, but given the numerous issues that you and your children have, hospital may be your best bet. We live in Portsmouth, NH and, in general, New England is not a great place to have PANDAS/Lyme combination. Dr. B in CT might be of help for you as well but he is hard to get an appointment with. Good luck

as a husband, I asked dr Hubbuch this question, she said that she had heard of a case but she could not substantiate it. and she is LLMD, meaning that research might not be there yet to either confirm or deny the possibility.

our ds 6 has similar behavior. over time with two abx, we've seen great improvement. after he gets sick, he flares again, but flares are not as long as they used to be. My guess would be that with long term abx, perhaps a combo. try to figure out which supplements work him and which don't. 23and me test can help you decide. for us, it was also necessary to go gluten and dairy free. then when he is capable of it, CBT might help you as well. did you test for Lyme?

the fact that tests are coming back normal might mean that you are not doing the right tests. for lyme, you may want to do igenx test since it is more sensitive then others. for PANDAS cunnigham panel is as far as we got to a proper diagnostic tool. but, as I understand this condition, you already know what is going on at least in some way since abx had positive results on your dd's symptoms. now, i'd say, the question is how you can put her on "prophylactic" long term abx. this is done routinely for syndham's corea. In your place, my short term goal would be to convince the pediatrician that she need prophylactic abx as you search for answers. you can print out basic info about PANDAS and share it with your dr. You can also contact Dr Sweedo at NIH -- apparently, she is willing to work with local drs and help them establish a course of treatment. Long term goal is to see a PANDAS specialist, so call one closest to you. You may also want to find an immunologist or other specialists since your child may have more than one condition. Good luck

dedee -- your children seem old enough to start cooking some simple stuff. get a rice cooker, make a lot of rice and . . . stuff. Grill is your best friend -- grill tons of sausages and freeze them. oven, too -- potato and carrots with a chicken seating on top. half the potatoes and cook at 420 for an hour and 15 minutes. add water at the beginning. pork cutlet and salad. asian stores are god sent -- but read labels. Stews over the weekend. What I do to make things really easy is rotate 10 simple recipes. Mexican, Indian, Chinese, Sushi, and so on But, yes, if you have a stressful demanding job, someone needs to help you.

thanks for clarifying that, LLM. We are, too, hetero and we have similar problems. but susieq's child has only one hetero out of 3 CBS genes. I don't see how her absence of mutations on all but 699T would give her problems with sulfur. Perhaps I just don't understand mutations well enough.

I am sorry that no one is commenting on your actual results. As far as I can tell, these are not mutations that should make you worried about sulfur. do you think you have any symptoms associated with inability to process sulfur?

I am so happy for you, too. I think I remember that your dd is seeing dr L. If that is correct, I hope you share the info with him. did he prescribe abx?

and don't wait to start Abx. do it asap

i vote for abx. cbt helps only after kids are back in the state they can be helped.

i see. two weeks should be enough for all swelling to go down. but I would call the dr administering ivig to ask, good luck

why would concussion have any influence on ivig? can you tell us more about the connection? thanks

You may want to post this question as a separate thread just to make it more visible. what I learned is that with one mutation, +/-, you are at 50%, with two, it multiplies geometrically. since you have only one, i would venture a guess that your child is not sulfur intolerant at all.

you may not like this answer. many blood tests are not precise and therefore numbers are not exact.

did your kid have sleeping problems on lithium? my kid could not fall asleep the first two days on it, which is very unusual for him. we had to lower the dose and on the third day he slept normally.

here is another no, if you need one more. no symptoms, no lyme tests.

it might be counter intuitive, but instead of anti-acids, you may want to use vinegar. Good quality cider winger with a mother, one table spoon in a glass of water on empty stomach. It helped me greatly. there is this also, some people who have GERD get over it on a gluten free diet -- my dd did.

LLMD suggested lithium for our ds, 4.8mg x2. ds had high taurin on amino acid urine test. We started today and I think we are seeing mild positive results immediately. He is not getting stuck as much but is kind of floating. Any experience with lithium? thanks!

is it an option to get abx in liquid dose as in for little kids? our ds is 47 pounds and we finding abx pills for him is hard.