KaraM

One other question....what are some other natural anti inflammatories? I asked Dr. B about using fish oil and he said it wouldn't hurt but it would take an awful lot of it to get to the anti-inflammatory levels needed. Thanks again, Kara

Thanks for the advice. i do give my dd8 ibuprofin 1 - 2x a day. I worry about the long term effects. We've been doing this for several months. How would you define "long term?" Kara

I guess my understanding of it all is that PANDAS actually IS a subset of PITAND - one of the several infections that can lead to a neuro psych disorder... Have you tried the Cunningham test. Isn't that really the closes thing there is to a PANDAS/PITAND test? Or does it just imply PANDAS?

I will likely buy a few copies to have on hand and lend them out/ and/or give them as gifts. (I already bought an extra hard copy for lending). I will probably give a copy to our school adjustment counselor so she can lend it out as well. We have a small local bookstore that doesn't always stock anything but best sellers - so I may try to get them to display a copy as well.

We give our dd8 Zithro every morning after breakfast. We also give her ibuprofin in the morning and sometimes in the afternoon (we've played around with that and found that when we don't give it to her, she starts to question lots of things). We try to have her eat some yogurt/drink a yogurt smoothie a few hours after the abx every day. That forumla seems to be enough for us right now... Does th soy yogurt have live active cultures in it. That's the important thing. Can your child have Kefir? There are lots of probiotics available at Whole Foods - from chocolate bars to powders. Some people have reported that those with active strep cultures (anything that begins with "S." in them cause exacerbations in their kids. If you search past posts for "probiotics" you will find a lot of discussion around this. Kara

Technically, if it is not strep that's the culprit, but some other infection, if is referred to as PITAND (pediatric infection triggered autoimmune disorder). Your child should really be tested for other things besides strep - at a minimum for mycoplasma pneumonia to see if it's still there. You may want to have a complete immune workup done. When my daughter saw Dr. B. he ordered about 19 different tests on her to see how her immune system is working. A few different ways to find a doctor. Post the question on the board asking if anyone has found a helpful doctor in those areas. Look at the helpful threads section at the top of the forum and review the one about doctors seen. You may find one it the TN AK area. I have a list from March. There is one doctor on there from TN Daniel Kolb in Franklin. 615- 791-9784. You can try him, but the list is old and the newer one may or may not still have his name on it. You can get an updated list from www.pandasresourcenetwork.org. In the end, though, you may want to figure out a way to see one of the top 4 PANDAS docs. Dr. B. in CT, Dr. T in NJ, Dr. L in MD or Dr. K in Chicago. Kara

I copied this from Hierge's post about his visit with Dr. L "I found out yesterday that Dr. Latimer actually takes ONE insurance company and for military families like mine, we lucked out. She's part of Tricare. I'm not sure if other companies will cover her hefty initial consult fee and subsequent visits, but I'd definitely try. "

What about a phone consult with her - would that be cheaper. I think I heard she does them and if I remember correctly it was a couple of hundred. I also heard there is one type of insurance she takes (that for military families). Don't know if any of this is true. How far would it be to travel to NJ to see Dr. Trifiletti? I understand he also does phone consults.

T. Mom I can't remember if I sent you the OCD and Role of School Personnel article. If I didn't, try this link. http://f1.grp.yahoofs.com/v1/wHukTARHFg4f1Lxk6WQSkXS303pluqTYIBgsRPk6DIjPcyTt9gGft8capatS7Es1aRHZMrN9iiuHtdn7g2UXDg-sRxBCzdiPXMJ2/%20Children%20with%20OCD-The%20Role%20of%20School%20Personnel If that doesn't work, PM me with your email address and I'll send you the article. Kara

Didn't do it for my daughter, but did it for me. Looks like I'm off to Whole Foods for some sort of natural remedy, too...

I'd call Dr. B first thing this morning and report the leg pain. my guess is that if iti is a side effect of any of the meds, he would know and tell you what to do.

Melissa, Have you gone through the FA[Q in the helpful threads section or Buster's flow chart (also in the helpful threads)? These two documents will help you establish a path to follow. If I remember correctly, something like 37% of kids with PANDAS don't show high titers. The other thing is that strep may not be the culprit. It could be some other infection that antibodies reacted to. (i.e mycoplasma pneumonia, Lyme). You need to go to a PANDAS literate doctor. Where are you located? Kara

deleted my double post

Hi, So sorry to hear what you and your son are going through. You will find a lot of support here. First and foremost, if it is PANDAS, 10 days of abx is not enough. The first time by daughter went on abx, she did not start responding until day 11. Then, after the 14 day dose ended, a week later she relapsed. She is now on propylactic abx since March - is about 95% better.Please take a look at the "helpful threads" section at the top of this forum and find the FAQ post. Or, alternatively, go to www.pandasresourcenetwork.org and look at the one there. It is a great way to look at questions and answers about how PANDAS is diagnosed, treated, etc. You may find that your child is showing OCD like symptoms or tic/Tourette like symptoms. The repetitive speech certainly sounds like it could fit in that category. The urinary issues are a PANDAS symptom. Your son's case sounds complicated. I think you really need to go to a doctor that knows what s/he is talking about. Your pediatrician, while at least aware of it, is clearly not knowledgeable. Where in the country are you located. Furthermore, it could be your son'sreaction to something other than strep that is causing the symptoms. A PANDAS/PITAND literate doctor will test for these other things. Have you heard of the Cunningham test. If you can swing $400, it may be worth doing. The FAQ talks about it more. I have to sign off, now. But I wanted to respond with some initial info and support. Hang in there. Kara

You hit the jackpot for location, 2Girls Mom! Dr. K is in Chicago. This is his website:www.webpediatrics.com Lots of good info on PANDAS there, too.

Hi And Welcome, If you haven't already, take a look at the Helpful threads at the top of this forum. There is an FAQ that is very helpful in figuring out whether there is a good chance your child has PANDAS. I agree with Peglem. Get her (actually, get them both) tested for strep. If the rapid throat culture comes back negative, have it cultured. If that comes back negative, get a blood test. Also, take a look at the thread about doctors and see if there is one in your area. What part of the country are you in? The top are mostly on the east coast, plus one in Chicago. You should read Hergie's recent post about his visit with Dr. Latimer (at the very bottom). She is one of the top docs, but she said she only thinks there are 4 in the country (including her) that are truly qualified to treat. You may be able to get started with the strep tests,but you are going to want a good doctor on your team. And most pediatricians are just not informed enough/open minded enough to be up to the task. The website www.pandasresourcenetwork.org has a section for doctors and a lot of good info for you, too (much of it similar but sometimes easier to find than info on this board). If your doctor give you a hard time about getting the strep tests done, show him this recent post by the director of the NIMH. You could also print out some stuff from the above website. http://www.nimh.nih.gov/about/director/index-ocd.shtml Kara<BR class=Apple-interchange-newline>

Will try it tomorrow with both me and my dd8. As I've read more about symptoms of yeast in kids - the giddy, silly, drunken like behavior is making me wonder (about my dd8, not me - I have other symptoms, the details of which would be TMI for posting ...). But like another parent said, I'll take that giddiness any day over the rages!

Thanks for your post. I was at the conference, too, and was duly impressed with Dr. L. I remember that feeling of finally having someone knowledgeable (in our case Dr. B confirmed the diagnosis). Even though I don't want my daughter (or any other child) to have it, getting the official diagnosis felt like a victory. Keep us posted as to how your daughter responds to the changes in her medication regimen. I'll be thinking of you. Good luck. Kara

Try this link to some initial survey results. It's from Buster's Post on Aug. 1 entitled "Yes, Another Survey" Look at question number 8 to see how people define "sudden onset" http://www.surveymonkey.com/sr.aspx?sm=HJlwfEnDARsXJ5S_2fSwCVBCIrdtKJdXjluik7YIID2Xo_3d Kara

Welcome. Yes, I can so relate to how quickly a good day can go bad. And I've got to tell you, this "sudden onset" requirement drives me nuts. In some ways, I don't know when it began for my daughter, because I can now point to little things that may or may not have been minor OCD/PANDAS . On the other hand, it all slapped me in the face one snowy morning last December when she couldn't get dressed because she was afraid her clothes were contaminated and would make her sick. However, that had been building slowly over the course of a few months. I'm thinking it started in the late summer/early fall with lots of questions about the swine flu (so I ask myself, was it the questioning that was sudden onset); then she started washing her hands like crazy (did that just happen one day??? - I don't know)...Then individual articles of clothing were "dirty" so she couldn't wear them. Our pediatrician initially didn't test her for strep when we brought her in for OCD because his understanding was it had to occur within 6 months of a strep infection. There is so much misunderstanding/lack of knowledge about how PANDAS can present. If I compare her from one year to the next, I could say she was a different kid. But I can not pin point a day, week, or month when it all began. I'm just remembering now, but Buster did a survey a couple of months ago asking about "sudden onset." I'll find the thread and link to it in another post. If I remember correctly, the "sudden onset" thing is definitely not universal. Kara

I don't have that letter, but if your child presents with OCD symptoms, I have an article about the role of school personnel and accomodations that can be made. I also have an article from 2004 issues of School Nurse magazine. Send me your email if you want either or both. Kara

Stephanie, Thanks for all of the info. How is Clostridia diagnosed?? Is it a clinical diagnosis or do they test somehow? Kara 2. With natural abx you have less likelihood of developing clostridia or other gut bacteria which is common due to high dose abx. That is b/c most of these herbs are very broad spectrum, and do not have antibiotic resistence issues. According to our DAN doctor, he says that many pandas patients get rid of strep but then are left dealing with clostridia due to the abx and the clostridia causes pandas symptoms (in our case, worse than strep-related pandas symptoms - I'm talking complete psychosis). Many of these parents do not know their kid has clostridia (or other bacteria) so then they increase the abx, clostridia gets worse, etc., etc. Vicious cycle.

You will get through. Remember the eye contact games you were playing in the car, too. I will keep you and Allie in my thoughts. Kara

I don't think COW is the right word.... $25,000?!?!?!?!?!? Awesome news about your son, though. Congratultions to all of you.Worth every penny and more in that regard. To quote AmEx....Priceless.

So you know your note alone, I've always been confused about the episodic nature as well. Once my daughters symptoms started in the fall of last year (when she was 7), they only got worse through February/March (when she improved with f14 days of abx, then backslid, then went back on abx and worked her way back to where she is now - about 95%). She's had slight slippage and rebound's since then, but no "major" episodes. Maybe her episodes started earlier in her life and went away, but we just never recognized it and thought whatever behaviors she was showing were "phases" because they didn't seem age inappropriate at the time. Sorry I can't provide an answer. But miserly loves company, so I thought I'd chime in. Kara