pr40

sorry, 4nikki, i can't resist it: if in dr's eyes, patient is not sick, there is no obligation in his/her eyes to treat. not treating is in this case an opinion and fee is for service rendered just as it would be when there is a diagnosis. if not treating were criminal according to the law, I would have sued many drs so far and would have gotten rich in the process. what it is substandard performance. they SHOULD know. but they don't. Incompetence, unfortunately, is very hard to prosecute. negligence, on the other hand, is very easy if there is evidence.

this new yorker article http://www.newyorker.com/magazine/2015/04/06/electrified

swallowing problems may be ocd related, the rest on the list is gut. I would venture to say that many on this list have some stomach problems. three ways that I know to deal with it: 1) diet -- it depends what food you can't tolerate 2) stomach lining (leaky gut) -- glutamate and linoleic acid 3) calming down iritation (in case of IBS) -- probiotics I don't know what the cause is. In part, apparently, stomch problems are the cause of P/p, and not th other way round. I guess, the cause has to do with the general as well as specific (e.g. celiac) auto-immune problems.

The New Yorker article made me think that tDCS could work for PANDAS as well. there is a lot of talk about it on the internet and two PBS mentions. Has anyone here tried it? We ordered a kit and are waiting to arrive. will post our experience.

this is just about the logic: do refers to what doctor does. if he does not treat, the doing is not treating. not treating, by definition, does no harm. also, doing is defined in respect to what the doer can do, not inrespect to what someone else would define as doing. medecine is very conservative. not treating is an option. not treating does imply that you need to go elsewhere for care. it is a referal. I am of course not defending the doctors.

dr hubbuch in watertown. does not take some (most?) insurance.

way to go. I am happy for you.

Hippocratic oath says do no harm, it does not say help anyone who needs it. Unfortunately. P/p is still considered controversial. it does not exist in the diagnostic manual and most insurance does not recognize it. that is a bureaucracy

this worked for us several weeks at a time: share care with another "normal" child. girls would spend until 1pm at the friend's place then from 1 to 6pm at our place. I don't think this can last more than 2 weeks though.

a clarification: ivig can be adminstered at your home. it takes only a nurse to do so. what's hard is getting the right order. so, i think, you are asking if we know someone who would order it for you?

well, it is also possible that your child does not process sulfur well and that it is turmeric causing the reaction. our children would react to turmeric just as yours did. we know from 23 and me that sulfur is a problem for us. discontue it and see if the symptoms disappears, strat it again in a week or so and see if it comes back or just do 23 and me. you can read about turmeric and sulfur here http://www.livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/

to be able to read articles published at PubMed Commons, I need to be a member and to be a member I need to be invited by someone who is already a member. Since publications from PubMed Commons were posted on this forum, can I please ask you to PM me if you are a member? thanks in advance

we did igenex lyme test and three bands were mildly positive. which now i think of as false positives. I don't think they have lyme, more likely abx help regulate glutamate in the brain. we now stopped second abx for ds and his "autistic" symptoms (wringing hands, leaning into you, obsessively pursuing one issue, etc) seem to slowly creaping in over a period of 3 weeks now. thanks for your question

with both kids, slow and gradual change over two year period. when we stopped abx, after first cold, drastic deterioriation.

dr K je iz Hrvatske. Are you, too? there was someone on the forum from Croatia a while ago. Pozdrav ako ste sa prostora bivse Jugoslavije!

Symptoms you mention fit PANDAS/PANS. you have also the trigger, strep, which means that the picture is practically complete. the best thing would be to find a PANDAS/PANS dr. If you cannot do that, NIH has PANDAS/PANS guidliness whcih you can present to an openminded dr. since you had good results with diet change, long term abx might be enough for you (as opposed to IVIG). We saw really good results with tics when we switched ds from augmentin to Ceftin (250mg x2). Iburopfen can help during exacerbations. are you doing supplements? fish oil (make sure that mercury is taken out) and other anti-inflammatories may be helpful.

there are several sites now that offer interpretation. we used http://geneticgenie.org/ you have to run your results through these sites to get comprehensible info and advice

if nuro is willing to consider p/p, with strep found, he/she has the reason to prescribe long term abx and/or IVIG. symptoms support such course of treatment. I would pursue this course of action. be careful with turmeric -- not everyone can process sulfur.

one word: apple sauce. dd never had any problems taking pills but ds does. he is 7 now and he still asks for apple sauce. take a spoon of no sugar added apple sauce and you can put the pill either under the sauce or on the sauce. Kid's head should be either chin up or chin up and to the side, that movement opens the throat. we never had any problem with swallowing.

if I remember correctly, since dd's diagnosis was post-strep neurological issues, our PCP ordered brain scan, AKG, as well as some blood tests. all covered by insurance. nothing unusual was found. PCP also sent us to a specialist, neurologist in our case. with ds we did not do any of these tests.

The other thing I have not done is go dairy or gluten free (have cut back though). Do I need to? -- cutting back will have little benefits. for gluten you see results after 6 months, for dairy after two or so. and that is when you completely stop. we stopped gluten and diary on the assumption that they do not help but hinder infammatory processes. (i happen to be celiac, so it was easy to have the entire family go gluten free).

flare on abx -- all the time here. on tics: Ceftin 250mgx2 day helped our ds. we switched from augmentin

article I saw today. I hope this is for real. http://www.natureworldreport.com/2015/03/25/autistic-child-improves-on-antibiotics-raises-question-of-autism-gut-bacteria-connection/

since no one else with more experience with ivig is responding, I'll try. the question after ivig is if it works 6 months and a year out. your kids are under attack of their auto-antibodies. are exacerbations less bad than they were? we did not do ivig, only abx. our kids improvement was very gradual. the exacerbations were slowly losing strength and we were seeing more time btw them, longish stable periods (with daily difficulties).

http://www.medicalnewstoday.com/articles/290534.php think we are seeing the end of one PANDAS/pans epoch and a beginnig of a new era in psychiatry. it seems to me that this explains the case from the book Brain on Fire and some cases here on this forum. now we just need a break through about OCD and tics and fixations, which, I hope, is next. yeah!