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I was just stating that IN THIS ARTICLE (the one that was posted in this post)it did not say mechtler told them all this. I would be happy to read what he does say. I have heard the psychiatrist from harvard insinuate about secret connections and various other implications. I would not say credit to dt mechtler just trying to be fair with the info given IN THIS ARTICLE.

I was just stating that IN THIS ARTICLE (the one that was posted in this post)it did not say mechtler told them all this. I would be happy to read what he does say. I have heard the psychiatrist from harvard insinuate about secret connections and various other implications. I would not say credit to dt mechtler just trying to be fair with the info given IN THIS ARTICLE.

Assualt could be physical. I am not playing devils advocate,really, but it does not say mechtler told them all this. This article is ridiculously one-sided. What a waste of space on the internet.

where is the mention of sexual assault? I cannot.believe what is said about these girls who just wanted help!!!

I wanted to add that we canceled all sorts of things last minute due to her explosions and other kids had to miss all sorts of stuff. We dropped out of life for literally years due to this. It has created such feeling of resentment (though the other kids have been remarkably understanding) and frustration and even jealousy~~ do what ever you can to stop this! I totally completely agree that they can not always control it. any skills you both or your children can learn to cope will go a long way to diffusing these. I wish so desperately we had been firmer and had some coping skills before it all hit the fan! Those skills come in handy with non-PANDAS kids, too

I have been there done that with my children with PANDAS. I do believe that generally it is out of their control, but it does tear a family apart. One thing I found helpful, though, honestly, in the midst of severe PANDAS rages, it did not help a huge amount, was a technique by a man named Kirk Martin. His website is celebratecalm.com He was local to my area a few years ago and used to give talks at churches and schools. He has now moved to TN, I think but still travels and does free talks. I would try to see one or maybe you can get some ideas from his website. His CD's are great, I bet, but since PANDAS is often out of the child's control, it would not always be helpful and it is a lot of money to spend in the unique situation of a PANDAS kid. Another idea is the series of workbooks "what to do when your brain get stuck". There is an anger one (maybe what to do when your temper flares"/? perfect 8 yo level. Best wishes. I know this is so horrible to happen in a home.

We actually had an elderly family member who become unable to walk suddenly and was diagnosed with conversion disorder. It was heartbreaking, as several family members who did not "understand" really felt as if the family member was manipulating or just depressed or lazy. The family member became wheelchair bound and never again walked. The elderly family member not only lost the ability to ambulate, but had to endure, at times, uncaring treatment from doctor and family members who thought it was "all in her head". I am sure there manipulators who would create a symptom for their own purposes, but when symptoms are REAL, it is because something REAL is causing them. DUH.

My daughter (whose PANDAS is doing well now) has this and in fact the other night came to me, with it bothering her quite badly. Her hands (tops and palms) and her entire foot from the ankle down was red and itchy. I thought It almost looked slightly swollen, but she did not think so. It was almost a "burning itch" , she said. I do think it is some autoimmune response, which she had some indication of a potential autoimmune condition before PANDAS struck. (arthritis and psoriatic spot on her scalp)- both of these have gotten better since pex, IVIG, zithro. Obviously, those tx would help any autoimmune issue, I imagine, at least temporarily. If it happens again (it used to happen more frequently) we will go see our family doctor, I suppose. However, the red bump issue is something that seems constant on my 4 yo's face. It can be the same area or even a few different area, but she always has one or two at a time. They did go away last summer, when she was on antibiotic for something else. My family doc thought I was an idiot when I asked if it was possible strep or staph. (it never really gets worse- just is always there). She does not pick at it at all. I told our PANDAS doc and she thought it could be a form of impetigo- but that was not on examination. Does anyone have any medical "proof" that a bacteria skin issue can show up like this? I would love to take some to my family doc and get her treated! She does has some OCD & ADHD, so I do not want this (if it is bacteria) hanging around her.

I would ask on the lyme forum, even if Lyme is not an issue for you. I think some people there may have some Low-dose Naltrexone advice for you. You could PM matismom though I do not know if she is still on the forums at all. I think she may have some info about it. If she does not, I really think the lyme people may be able to help! I know you are asking more about Antabloc, but ask over there about that, too-- This Antabloc is interesting- as I thought there was a whole school of thought that the alkaloids in tomatoes, for example, were inflammatory! If it works PLEASE let us all know ASAP!

great video. thanks for sharing this- & YES it does look the NY girls !!!

Laurenk, do you have any info about humira and TRD? I did a quick search and could not really find much. Thanks!

This is something that some of us have talked about before. I think that down the road, maybe. It has been mentioned to me by several docs as a possibility, but no one is really "ready" to do it. Cellcept and rituxan are the ones mostly discussed, however we did at one point have a rheumatologist who was planning to start my daughter on enbrel, right before she took a huge turn for the worse. I rreally hope this does become an avenue for us at sometime in the near future.

We are not patients of, nor have we ever even seen Dr Elia. That is my caveat-- I just wanted to jump on board to add another (though an admitted hearsay) opinion! However, I have talked to several people who have been there to her for PANDAS tx (people on and off this forum- can you believe there are PANDAS parents NOT on this forum ?? ) I think PhillyPa is correct-- new, sudden onset, severe cases ( and I would probably add young in there, also!) are in good hands with her. I think it may a facility position, from what I have heard. I would hate for you to waste your time there and also to have them tell you discouraging things, Wilma; based on the experiences I have heard about & what I remember about your story. Your daughter is 14 or so, right? She has lyme or a co-infection, if I remember correctly. I would call Columbia. I wanted to take my child there a few years ago when we first found she had lyme, but she was too young. Now she is older, but lyme is not the problem. They have a very well-known neuro-psychiatric lyme clinic. I think Dr L is a good idea, too!

At close to that weight we do more like 60mg x 7 d then taper down over a month.

Briefly, Dr Brian Fallon in NY is doing study on iv rocephin on adults. Also there is some info about in utero flu and schizo and also toxoplasmosis gondii. I think I have more info, I will look!

Thank you so much for posting this! I am so glad to read of your recovery. It very encouraging to read this. Just out of curiosity, if PANDAS was mentioned as the cause of your sudden onset- did anyone treat it as such? If not, do you know why? Again, thanks for taking the time to post here.

So I will admit I did not watch the whole thing- I skipped around, but watch the last 10 minutes straight. I did not think it was totally horrible- I mean, it was nothing new- though I thought it was very harsh on Dr T. Please do not throw tomatoes at me--- I actually felt bad for the doctors at the end - they are obviously feeling very attacked. I am starting to wish ( for everyone's sake; kids, Dr T the Dent docs) that all this media frenzy just stop and everyone (docs, media, the public)accept that the either : a: the girls' do not accept the docs' conversion disorder diagnosis and they have the right to do that and go see what ever doctor they want or b: the ones that accept the conversion diagnosis just stay at Dent. I think they will be missing a chance for a cure if they do that, but maybe their circumstances are not so horrific- or they would, most likely, not stop looking and accept that diagnosis. I bet lots of mild PANDAS or OCD kids live satisfactorily without treatment! Probably 90% of us were told that there was nothing "real" wrong with our kids- did we accept it? No. I am sure the parents in Le Roy are just as determined and resourceful as everyone on here. I trust that they can make the best choices for their kids. I also think Mechtler and McVige are doing what they think is best- I think their intentions are good. I just wished they realized that medical science does not have every answer yet. I will say that I steer clear of any doctor who thinks that we already have figured out everything there is to know about the body. I am probably making no sense- so you can stop reading me now

Was this an opinion piece? Was it supposed to be an objective compilation of sources? I feel kind of brainwashed after reading it

Anyone partake of this?? I am hoping to hear how it went!

Excellent questions posted by T.Mom- I will be working during the chat- & frankly, probably do not have the guts to do it anyway-- but someone please print her post and ask that-- WORD for WORD!! and then post their answers!

Pm.d you. I am not molly's mom,though:)

My 7th grader has major anxiety in Math. Facts and drills are also a big problem. In fact, her inability to do math without major panic was one of her first PANDAS signs post strep. She is now in CBT for school anxieties. Math is still the #1 problem. We have not even started working on that yet!

She is speaking!!! Awesome.

Maybe dr latimer was referring to a group she sees from that area? Not an official cluster, but a seemingly large amount from one general area, in her perception. I agree that these bickering really do not show alot of professionalism. Do your part, say your peace, offer your proposed treatment plan and let it alone.

I will PM you some info- I have Cigna