dut

that can be reached via the Free EW fb page http://www.facebook.com/freeelizabethwray?fref=ts please sign it. This could so easily be your or my child.

I e-mailed this state senator (not mine nor EW's), heartfelt plea blah blah, dunno if it will do anything but he's a high up honcho with an interest and if he got loads of mails.. http://www.pandasresourcenetwork.org/2012/05/23/crisco-wins-senate-vote-for-study-of-p-a-n-d-a-s-syndrome/

Hello. If it were me, I would ask your friend if they believe that the standard of treatment for RF, of keeping a child on abx until they are 18 or older so as to protect their heart, is a reasonable use of abx. If the answer is yes, then I would say, surely, protecting a child's brain is as important as protecting their heart. If your friend disagrees with RF treatment, too, then I would point out that we do many necessary things to meet the needs of society now or its individuals that may have negative ramifications for the future but still have to be done. Heck, basically, living as an organism well out of it's ecological niche is fairly knobbling most of the stuff round us (yup, I'm a hippy too) but you gotta make some decisions that hopefully balance now needs and future needs. It's a whole academic departmentful of ethics arguments but what would he or she do if it was her/his child that were at risk? Perhaps, the real root of the argument for your friend, unless they are a real 'walk the talk Jainist type' (for whom I do have much respect, actually, but can't do myself), is the psych/medical schism that says that abx make sense for a bodily need but not a mental health need.

Just bumping to encourage people to make as much noise on this issue as possible.... thanks

Just in case anyone hasn't seen this - bumping.

Contaminated steroid causing fungal meningitis..... http://www.bbc.co.uk/news/world-us-canada-19838723 A briefing by the CDC and the Federal Drug Administration (FDA) said a fungus linked to the steroid medication had been identified in tests of five patients. "Out of an abundance of caution, we advise all health care practitioners not to use any product" from the company, said Ilisa Bernstein, director of compliance for the FDA's Center for Drug Evaluation and Research. New England Compounding Center is a type of pharmacy that mixes ingredients for customised medicines. The steroid in question was three lots of methylprednisolone acetate from the firm.

Me too...

PM me too, thanks

That's wonderful news!

Hi - I too would be wary if the basis of the dx was simply the lack of an OCD component. My classic PANDAS dd9 will have flares at times that have no OCD component. At the moment for instance she is ticcing away but no OCD (we are in week 8 or so of flare) She had a couple of nights at the start with some fears but, hey, hard to tell that with a 4 yeat old. Also my other PANDAS child started so early with it, 2 or so or maybe earlier, and we saw no OCD until sometime this year when 5. He was a stutterer, bit ticcy, ADHD looking. The whole gamut. I would have even missed the little bit of OCD that we see if it weren't for my dd and knowing what to look for. While I agree with Chemar that folk on the internet shouldn't blow a dx out of the water, I do feel we can caution and I'm not sure if it is Dr Latimer if this Dr is at Yale, I thought she worked somewhere else.

Are you giving with food? My dd threw up once after zith without food. She refuse all meds now unless she has eaten. Or could he have another infection/stomach bug going on and the nausea/diarrhea are maybe not caused by the zith. What probiotics are you using? Ds will get diarrhea unless we use very good quality probiotics and florastor (sachoromyces boulardii) and we have to go with fairly high amounts. Hope you get it sorted out...

Very happy for you

Infectious Behavior -Brain-Immune Connections in Autism, Schizophrenia, and Depression http://www.amazon.com/Infectious-Behavior-Brain-Immune-Connections-Schizophrenia/dp/0262016451/ref=sr_1_2?s=books&ie=UTF8&qid=1347259769&sr=1-2&keywords=infectious+behaviour I was wondering if anyone had read it and if you thought it worth getting? He also has an interetsing blog.. mainly autism BPD and depression but mentions PANDAS.

http://www.bbc.co.uk/news/health-19511684 Infection with RSV led to a "complete loss of suppressive function" of the regulatory T cells, after which the mice developed asthma-like symptoms......there might be a window in early life when the cells were vulnerable to being "crippled".

JuliaFaith - hi - did you contact Shelley Mackaman? We have yet to get in for our first appointment - couple of weeks or so hopefully. If you made contact what was your impression? She is in network for us (premera) but would be interested in your experiences with her or others in our area. How are things with you, in general?

Hi - In our experience, anything that can trigger an immune response, can trigger symptoms. For our dd9, an acute allergic reaction to a food that she had a known allergy to (treenuts) caused a flare when she unknowlingly ate some at school one time. Not sure if this is the case but some years back, I spoke to Dr James Leckman from Yale about PANDAS and he said in kids that react to more than just strep that once strep causes the body to produce the cross-reactive autoantibodies that any subsequent immune provocation can cause the B cells to pump out all the same antibodies again, including the autoantibodies. So as they say 'strep loads the gun but any infetion can pull the trigger'. Dr T, however, doesn't believe it's antibodies doing the damage but that instead it's an aberrant or in his words, an alternate fever response. Something to do with prostaglandins/cytokines and not the basal ganglia but some part of the hypothalamus that talks to many parts of the brain and thus you can have such a diverse constellation of symptoms and why inbuprofen can work so well. ( I probably murdered Dr T's theory but you can hear him explain it on the blog talk radio session that has already been posted). For us, we stopped all abx unless we get a fairly certain bacterial trigger 'cos my kids seem to react to virtually anything and prophylactic abx didn't make much, if any, difference with numbers of flares. We finally had to let go of chasing the trigger and look at supporting their systems and underlying issues that might be contributing such as methylation.

good idea- just changed mine.

And there's more - got a call to pick dd up from school feeling like she was going to vomit and she had a stomach ache. She seems fine now so not sure if she's prodromal, playing me or some PANDASy school refusal. Office lady was a bit suspicious and reminded me that dd had called 8 times last year to be picked up with the same symptoms... oh joy! AmySLP - I'm glad I'm not the only person horrified by water fountains

Momwith-- I think you're right. I was going to wait for a response but I will channel my inner American and send her with a water bottle even if I don't hear back! We were seeing our fabulous ped today anyway (ds and I) and I wanted to sanity check the fountain issue as I'm sure I'm a germphobe since this all started but she agreed and sent us home with a script saying dd has an infection triggered autoimmune disorder and that she would be concerned wrt infection if she had to use the fountain. She's also writing a letter for me if we need to take it further. I just love our ped...

Hi - could he do part days? and ease in to what he can comfortably manage?

Hi - I know - what's up with the bottle thing? this is the firstime weve been told this. It may be an individual teacher thing. I mailed her teachers this am saying Hi - I was hoping you would be ok with child's name briging in a water bottle. Child's name gets infection-triggered tics and OCD and although we don't keep her in a bubble, we do what we reasonably can to limit infection exposure. If you want to chat to me about this some more, that would be fine does that seem ok Kept it short but left the door open for more.... I find it difficult stating what I want but not feeling too pushy, well I am British.. don't find it easy to speak up. Living in US now tho' so catching on

"Whoa there,Misty!" 2nd installment... my dd has been told today that they aren't allowed water bottles in class and have to use the fountain. Well as the fountain is (in her words) "a germ fest and I don't want worry tricks all the time, I want you to tell them so I can use my water bottle". Me thinks I opened some flood gates So.... she's sleeping on it tonight but she thinks we should tell school and the more I think about it, the more it feels the best thing to do. Now I've just got to decide how to best go about it....

I just love that. Great

Thanks for all the great replies I spoke to dd again and when she relaised that it may be tell or no appointment, she was unhappy but willing to go as far as saying she has OCD. She has told some close friends about her "worry tricks" already and seems happy to own it (we were playing a game in the car with her brother where you tell a facts about yourself in turns and she said I have OCD). I think it's the teachers that she is uncomfortable telling. She clams up and won't talk when I ask why but I suspect she doesn't want them to see her as different or treat her differently. I shall push a bit to find out why she doesn't want them to know. At least we've got an option now. To date, she has always held it together at school. She tics and her math nose-dived last term due to a flare but that's it at school. Perhaps it will be good to have something on the table at school in case we need some accomodations in the future. Thanks again. You are all very generous with your considered replies. I'm always so grateful for the generosity and knowledge of the folks on this forum.

Hi - my dd9 has been waiting for about 5-6 months to get in to see the only local therapist that our great ped would recommend for a PANDAS child. The therapist is obviously super booked up and although she says we can start in a week or so, I assume that she will only be able to offer new patients the not-so-popular appointment times that are during school hours. If this is the case my dd is adamant that we don't tell school why she is going. She does not want them to know about the PANDAS. I'm not sure what to do. Hopefully, we can work a non-school time appointment but if not what next... any ideas. Do I have to give school a reason? Even if it's not required (but probably is) should I tell them a reason anyway to keep on good terms as you never know when it can all go to ***** with PANDAS. Anybody got any good, weekly occuring excuses I did think of allergy shots but time taken would be too long and also why couldn't they be got out of school hours. I'm worried that dd will just not go if we have to tell the truth and although she is in a good place in general we do have some chronic stuff and now would be a good time to prep for the next exacerbation. Thanks for any ideas.