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Thank you for sharing- you write beautifully. You are an outstanding young woman. Happy Birthday :-)

I've had my dd5 gluten free/casein free for 1 1/2 years- she responded wonderfully to it- started eating all kinds of protein (she refused ANY meat before removing gluten and casein) When I had a phone consult w/a PANDAS Dr. last week, I mentioned my daughter had completely pulled herself off milk right after she turned 2- refused choc. milk, fun straws, etc. NO milk. He said milk does not help w/autoimmune- some sort of connection (I'd never heard that before) Also, it is said gluten and auto-immune disorders can affect one another (although she does not have celiac disease) She is nutrionally sound now that we pulled those 2 things-- her diet and food selections opened up...I try very hard to limit her sugar intake (yeah, happy Valentines/candy day) I just told myself I'd try it for 3 months- and if I saw nothing, I could always go back.

Wow! Sorry, hang in there---

Hi Malke, ((sorry)) I haven't had the dizzy spells with my dd5, but I do need to make sure she gets protein often-it seems she likes to eat every 2-3 hours, as well- maybe blood sugar related? We also don't have a problem, per say, with going to school (keep in mind only in 1/2 day K, and we lucked out on awesome teacher this year) BUT, we deal with a lot of anxiety- often manifests in being unable to get the 'right' clothes to wear for school (OCD) I find myself having done quite a bit of 'talk therapy' reassurance, positive: 'Mrs. L (K teacher) loves you.' I re-assure her how well liked she is by the kids, etc. I've had some less than finer moments: Yes, one time I actually brought up truant officers for kids who don't go to school. I feel awful typing that- but I don't want to get dd5 in the habit she can choose to go to school or not--- she actually really loves school, and the social interaction is HUGE to her well being. If she was very impaired, of course, I wouldn't force it... I've also had to let go a lot- if she can't handle her hair brushed, okay, I let it go- what she wears, I just aim for clean. Don't know if any of this helped--sending PV's.. Sarah

Right now we are using Klaire's Ther-biotic Detoxification Support (make sure you get the one that says: Detoxification) Love it- 50 Billion CFU's We are now giving Augmention SR 2x a day, so, I need a whopper probiotic.

Wonderful~ what a great idea. Quite creative! I will have to practice saying: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections ;-) Doesn't quite roll off my tounge yet.

Thank you- I'm rather new to the game, so as time goes on, perhaps I'll have more 'fight' in me. I brought this Dr. our CAM-K test printed, and highlighted, (175 score) along with a written time line of strep, of all the OCD, Separation Anxiety, loss of control of body and verbal, a clinical diagnosis from another MD whom I've been working with (not with our insurance) who would be happy to consult, etc, etc. I know we ALL have our horror story's about PANDAS and mainstream medical. This was the Infectious Disease Specialist I was referred to today: first thing I asked: Do you have PANDAS patients, have you ever treated it? NO. Why was I referred to you? I don't know. Then picks apart all the data I had provided. I have fought against Kaiser Permanente for my last time. I am done. I will continue to pay cash (out of my retirement account, if necessary, and at times it has been) for a Doctor who does not ridicule me, and wants to help my daughter get well. I am not flaming at anyone here! I guess this is my anger of today coming out. So far for school, I have only had to say: She has a medical condition that makes her very vulnerable to strep- I need strep notices, please. If I need a 504 later down the road, mama warrior will come out, for sure. I will break my back for any Mother or Father anywhere that needs help with this- But the medical establishment? I am too weary. It flairs my anger to very unhealthy places for me. I'm just not there.

Speaking of turning you reality upside down: Have you ever left a medical Dr. appt. (Infectious Disease Specialist through medical insurance, say) where they have essentionally told you that you are a crackpot, and you leave, 90% enraged, but there is 10% of you that actually thinks: %$!#. Maybe I am a crackpot. Just saying... This was my afternoon. Like I needed this again.

Fantastic on the IVIG improvements! Yes, my dd5 does rank- it goes along with her need to be '1st!' Sadly, especially with her little sister. I cannot tell you the number of times I've said: We are all a family. We all love the same. We are together. (blah, blah, blah) And she does get 'stuck' on subjects, where she asks questions again, and again, and again- needing reassurance.

Thank you :-) I did go back and read through Buster's information (amazing) and I still don't know, lol. Well, bottom line, I got all 5 of us cultured, the 3 kids both ASO/Anti-DNase blood tests, DH and I the Anti-DNase tests done all this week. Put a fork in me, I'm done.

I can't remember! I had both pulled on all 3 of my kids (my 5 yr. old is the PANDAS child- she had both tests last Spring, were in the normal range, but pulled again yesterday) Anyway, I decided to check both my husband and myself (worried Dad's story forever in my head) but I had to order them off of Great Plains, our own Dr. wouldn't do it. I only ordered the Anti- DNSase test, and now I think I should have ordered the ASO! Which one only tells you if you have ever had strep before? Did I order the wrong one? Thank you!

We've been on Azith. 200 mg for 32 days, we have had some serious backsliding recently (throat culture neg.) We started off with Wows! on Azith. Our Doctor today put in a script. for Augmentin XR to switch. Good luck at your appointment!

Yep, we watched it. It's our 'bonding time' with our 13 yr. old son after littler ones go to sleep. I had seen this email before I watched. I cried, tears rolling down my face. Sorry about the med mix up :-(

Yeah, I think I'm going to have to fly my daughter no matter which way I look at this. I do have an appointment with our insurance infectious disease specialist on Friday, but honestly, not holding my breath. Currently fighting for my own Dr. to pull my lousy titers.

Does he have his own infusion center for IVIG? How long has he been treating PANDAS? Thanks--in Northern CA. about 4 hours from Palo Alto (Stanford)

I was told today that it would be wise to get everyone who lives here swabbed, cultured, and titers pulled on all. Ugghhh, I am so overwhelmed right now.

Yep, DAN! Doctors are expensive, and don't take insurance (from my experience) I've had to pay anywhere from $350-$500 an hour! I just got my insurance Dr.'s to agree to run a full immune panel test (IgG, IgE, IgM, IgA) and that should only cost me $10.

You know what? I think the fact that we are here, and have FINALLY figured it out, is HUGE. To me, this is such a rare and unusual thing, and I have my own laundry list of woulda coulda shoulda (how on earth I missed all the OCD, unbelievable) and when I explained it to all the experts, and they were clueless, and all the money I spent thinking it was different stuff, going on dead end roads... I think that's the name of the game for the majority of us here. I see you working really, really hard right now, determining your next step, gathering information, and moving forward. God Bless, hang in there, Sarah

I am wondering this too! I do not want to get my whole family's blood drawn...ugh.

You rock Malke :-) Sent you an email...

I'm sorry Stephanie :-( It is so hard. With my own husband, just last night, I finally had to email him a couple pages off of Dr. K's website, and made him sit down to read it while I sat next to him. I have tried to go into more depth conversationally about it before, to try and educate with him , and his face would blanche with the stress of it- well, buddy, I'm stressed too- your the Father, you gotta come to this party, too, so we can get her well. I also sent an email out to his family yesterday explaining our diagnosis (and to politely tell them don't come near us with a sore throat), and they called him today, so it helped him to start talking about it, learning about it. But the day to day? Tough. Sending PV's------ Sarah

Hi - regarding your backsliding while you wait for your appointment next week - I don't know if you use anti inflammatories, but they can help if it is a PANDAS reaction. Quercetin and fish oil are good for long-term use, and many people use ibuprofen for short-term relief. I am sure Scott Smith and your Dan! doc will have lots of ideas about ways to reduce inflammation. Hi- I am using ibuprofen 2x a day, and restarted back on Omega 3 fish oil (have been off it for a year or so) I think my dd5's immune system is totally 'whacked' The last time she was 'sick' with ANYTHING was over a year ago- I ended up taking her to the emergency room for a bladder infection that came on, and while there, because she had a cough (although not a huge one) I talked them into a chest x-ray, which showed pneumonia. We got antibx. (can't remember which one) she got better, and since that time, over a year ago, she has not had a sniffle, cold, cough, NOTHING, despite the fact her K class in a horror show of constant illness, others of us in the house having colds. Now, it seems as though perhaps her immune system is waking up? The Scarlatina rash on her body, she has some mild sniffles, I think she is starting to hold urine, she says it hurts 'a little' I am wondering if we have another bladder infection, or what the heck is going on! By the way, she gets ample Vitamin D, and C, daily- GFCFSF diet, she eats well, multi vitamins, probiotics, etc. and has been nutrionally 'sound' for a long time now.

Thank you, thank you. Yes, I agree, checking for underlying infections seems to be our next step, although in the meanwhile, I'm not sure what to do about our back-slide... It will be interesting to hear next week the varying Dr.'s opinions. Thanks again everyone for weighing in---

About a month after the conference, you can buy DVDs of most of the presentations. Usually about $20/per session. So that's an option if you can't go. Check their site in the June/July time frame. Thanks, I just ordered the PANDAS DVD's from the 2010 conference.

Wow lyme mom, thank you. dd5 has never been exposed to ticks-we are in a non tick area, she has been very sheltered, we've never had pets. I do understand it could be passed in utero- I have no tick experiences I can remember, but did grow up in MN. My DH cannot remember ever having a tick. Myco. P. could very well be a factor here- Is this also true for Myco. P and steroids?She is backsliding on the Azith. we have kept the same dose daily dose- 200 mg. for 40 pounds, for 30 days now and continuing. She has a SCARLATINA rash on her bottom, and it has now moved onto both legs. I am very scared. I have an appt. with our DAN! on Thursday, an appt. with our medical Dr.'s to present this next week (they have no expertise in this, I know, but I have to try for their help) Lastly, I have a phone consult with Scott Smith out of New Jersey who is a PANDAS expert pending for next week to get his take on it. Scott Smith did email me back and said: A CAM score of 175 is very, very significant. Thank you so much for taking the time to reply. I am all ears with any information you parents have who have walked this before me. Again, I am running scared. I think she is very sick.