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Holy Moly, my heart is beating wildly. My poor girl, who I've been trying to help and figure out for years. Wow. I have a call into our DAN! for an appt. and forwarded him the test results. We've been on Azith. and ibuprofen for 30 days... We are backsliding. I wonder if the next step is a steroid. She was exposed to active strep as an infant. Followed by head growth jumping the chart, and unexplained fevers...nothing ever confirmed. Age 2 1/2 documented strep. Things went 'bad' from there. I'm shaking. I truly cannot thank the members here enough. Sarah & Samantha 5

Hi there- I looked into Houston Center for Homeopathy last Spring- they are wicked expensive ($500-$1,000 a month) Also, Pierre Fountain treats PANDAS with a constitutional rememdy- he has many success stories, and I believe, a 9 month waiting list right now- he does Skype appts., and really has a talent and gift. I did try homeopathy about a year ago, last Spring- before I knew anything about PANDAS, so really, I wasn't explaining my daughter correctly- but we went to a 'well known' homeopath (the gentleman who treated Amy Lanky's son) and for us, it did not work out. Tried another homeopath, with a different rememdy, and that didn't work out either- we had side effects. It was about a 2 month trial before I stopped completely. But again, I did not know PANDAS. If I were to try it again, I would set up an appt. with Pierre Fountain. (sp.? of last name) He wrote the book, Homeopathy, Sweet Homeopathy.

Hi Julie, welcome :-) I know you too from the old sensory board. It is really strange- for years now, I had not fully understood OCD. What was OCD, I put off on sensory issues. Now that I see clearer, it's so revealing to me. And I'm honestly not a hammer thinking everything is a nail- it's just I'm more educated now? I actually see tourette type episodes in my daughter now, and can't believe how I could not have seen all the OCD before. (Didn't help every professional would shrug their shoulders at me when I tried to describe it.) Sending you some prayers and PV's--- Hang in there- Sarah & Samantha 5

dd5 was really, really tired (despite good nights sleep) when first starting Azith. She would take to her bed, with a game, or book, and get under the covers for stretches of time, and say 'I'm tired' a lot- That passed as days went on.

You might want to look into these folks: http://www.coramhc.com/Map/Default.aspx There are some in Texas. Coram labs. It's like a chain of Infusion Centers. I called the one closest to me (1/2 an hour away) and talked to them for awhile on the phone, and was pleased. If we go IVIG route (and our insurance won't help) these people seemed reasonable in price, and expert in care. And, the close location is a big bonus. They told me they do 1st time infusions, have everything there in case of a reaction, and do the infusion according to the Dr.'s prescription. HTH.

If you are in CA. (looks like you are) we are a 'personal exemption' state; meaning, you can simply flip over the back of the yellow card, and sign that you have a personal belief about not gettng vaccinations right now. They cannot ask you one question about it. I am very surprised that in CA they would tell you that you 'have' to have anything, because in CA, you don't. You simply sign a paper or the back of the immunization card that you are waiving them. They can't say a word more to you about it, nor question you.

My Mother in law, while rolling her eyes at me: 'You know Sarah, kids really do grow out of things.'

This 'scarlatina' rash (and it looks EXACTLY like that) is now better on her bottom, but had moved down to both of her legs. My dd5 has constipation issues, we have been GF/CF/SF for a long time now, and she eats well, but we still get backed up. Our DAN!, who treats PANDAS patients, told me I had to keep her bowels moving, because, and I quote: 'If that strep gets backed up in there, that is not good!' So I am doing what he calls a 'gully wash' Oxy Powder, and a drink mixed with magnesium citrate, 1,000 mg of Vitamin C before bed. Her belly is huge right now (even though she is having small bowel movements every day- but clearly not enough.) Hopefully, this 'gully wash' will clear out her backed up gut :-( We also have been backsliding. Maybe this will help. (we are also on anti-fungal, and probiotics 2x a day)

Thank you, that's what I was thinking, the abx is killing strep toxins... All this, all the proof in front of me, and I'm still waiting for the CAM test to come back, before ALL of my mind will really accept it!

Thank you Denise. I've been wondering how your daughter is doing post her recent 2 day IVIG trip? The rash is on her bottom, on the bottom 2 cheeks, specifically. Last night, it also seemed to be on her knee, and ankle area. Strange. The Azith. (and ibuprofen!) is making a viable, significant difference. Lately, it seems she is having more breakthrough episodes where she can't control what she is saying 'You're rude!' with body movements, anger, lashing out, but they are much, much shorter in duration. Social anxiety has probably been the biggest improvement. Still OCD clothing, some seraration anxiety (can't leave kindy until the music starts, and the teacher kicks me out, in which she asks every day: 'You're coming back, aren't you??' But, it's been more extreme before--so all these seems doable compared to other times. Still... Thanks for asking, and replying :-)

Sorry I'm so full of questions lately. We are on day 25 of Azith. daily 200 mg. My dd5 never 'rashes', in fact, her skin is quite flawless. However, in the beginning of Azith., on her bottom, there was a sand papery red rash, turned white when pushed with a finger- then back to the reddish color. No pimples. Just red, sand-papery, turning white when pushed. Seemed to go away a bit, and now it is back, and I even see it on her legs. When I looked it up (of course) sounds like a strep rash. Do you think it's possible strep is coming out of her body, so to speak? Thank you---

By the way Malke, I am quite freaked out and scared too. This has been a roller coaster ride, to say the least. As soon as our CAM results come in, that is when I will let the school know- strep notices, maybe a 504 for school work if she gets in a big flair down the road...and honestly, I have been perparing myself and DH for a possible IVIG. And, yes, reading here is serious business. Because it is a serious thing. But, you are proactive, and strong. I know you. You can do this. xxoo Sarah

Might be too low! Oh, it hasn't made everything magic happy land- oh no. But there is a viable difference- social anxiety is reduced (school mentioned it to me) rages/episodes are much shorter duration, and I'd even say better cognition- however, how can I put this...things are not really 'okay'. No. They are not. Can you see if you can get a couple of weeks of 200 mg? And Malke, I wouldn't say anything to your school yet. I haven't said anything to Samantha's. But the teacher did pull me aside, about 3 weeks after being on Azith./ibuprofen, and actually said: 'Since coming back from Winter break, she seems more comfortable here. Laughing with other kids, acted out a bit in a skit in front of everyone...' Wild, right?

Malke ((hugs)) I almost didn't want to send you here, because I didn't want you to freak out. Our Dr. gave us a month (and extra refills) for a prescription of Azithromycin (200 mg a day for 40 pound child) and instructed to give ibuprofen 2x a day, as well, and take copious, detailed notes. It was then I saw a viable, real difference- even though, like your daughter, she fits the description, symptoms, to a 'T', or very close, right? And, I've had her DAN! basically clinically diagnose it. I still am holding out for the Cunningham/CAM test results (and now they are snowed in, in a state of emergency, big laugh on old impatient me) So, I guess what I'm trying to say, you don't know yet. According to my DAN!, the antibiotic trial/ibuprofen, is really the thing to 'see' Push for the prescrition for these--- and let's see. Here for you always, and thanks for being there for me, too, over the past couple years--- Sarah

Thank you-- and EAMom, that was very, very thoughtful of you :-) I started working w/ a SO. CA DAN! Dr. 4 months ago, because I just could not figure out what the heck was going on (my dd5 does not have autism, per say) we have come to PANDAS, and he is the one prescribing the Azith. we've been on- and the ibuprofen. He would write a script for IVIG. He does treat/have PANDAS patients. Of course, I am going to take this all (CAM results) to my medical insurance people, which is an HMO, but not holding my breath for real help from them. But I'm going to try! And, I do want to set up a phone consult w/ a 'pandas expert' to get a 2nd opionion. Yes, the $ just keeps flying out the door, and I thought that might appeal to my husband, but he is adament, and would rather we pay for it, if necessary. I can certainly see his point.

Thank you, everyone--- My husband rarely says: No Way! So when he does, it is serious. I did sit him down and have a talk on the severity of this, what we are dealing with- he is not opposed to IVIG, and would rather pay for it to have it the easiest possible way on Samantha (5) She is tender and fragile (when she is not in a rage/episode) and to fly her all the way out, stay for 2 days, put her through the hospital experience, for placebo, then do it all over again, he can't do it that way. Although we have seen improvement on our nearing 30 days on Azthiromycin (and our dose gets cut in half after tomorrow) and ibuprofen, we still have real issues here- just can't go on like this- awaiting our CAM test results, should be this week, but in reality, I think we are looking at IVIG.

Hi- he can't prescribe/give treatments, of course, until seen in person, taking on the patient- What I want to do is pick his brain, have him give me his opinions...present my case, get his take. So yep, have heard excellent things about him! Be happy to let you know how it goes :-)

I am leaning heavily toward Scott Smith in NJ. I also want my husband on the line, he needs to hear some things, too. ETA: I am also thinking of Dr. K, haven't been able to get a hold of their office yet. If anyone has any advice for me, I am all ears!

Thank you very much. The price quote I received was for 30 grams...so, this might cost more than anticipated...but so close to home... Of course, I want to make this as easy on her as possible. She gets very frightened :-( Sarah & Samantha 5 I also am going to line up a 1 hour phone consult with a PANDAS expert, to get another opinion.

UPDATE: My husband has said No Way to this- he will not put her through a 6 hour plane ride (she's never been on a plane) and the traumatic experience of IVIG for a placebo- our daughter is extremely anxiety ridden (although it's gotten better on Azith.) so I understand where he is coming from. He was clear: NO WAY. So, I'll let the Yale folk know right away. Looking into things closer to home, meanwhile, that won't make us flat broke.

And they seem incredibly cheap. There is one 30 minutes away from me. How nice would that be. I am sure my DAN Dr. would write the prescription for IVIG. I am also thinking of calling a specialist (Dr. K?) for a phone counseltation just to get another opinion. They quoted me: around $2,000 for the product itself- ballpark, depending on prescription, I mentioned Gamauex (sp.?) high dose. They said 1 day, 5-6 hours. $90. for first 2 hours, $45. for every hour thereafter. Yes, they take 1st timers, have RN's who do this all day long, and are equipped to handle allergic reactions. Has anyone ever used them? And, why is a 2 day dose considered 'better'? I know I have a lot to learn, perhaps this is where a phone consultation with Dr. K would come in handy, although my DAN Dr. does treat PANDAS patients... Thank you very much- Sarah & Samantha 5 P.S. I am looking into IVIG because although we have seen relief with antibiotics, I'd say we are at...70%? And, I don't think we can keep up this dose of antibx. much longer. I am 99% sure she doesn't have lyme. Have not checked for myco. P.

Thank you so much- beautiful--

Yes, the going back and getting a real IVIG is the, selfishly, reason I would do it. But, wouldn't it be something if this study pans out successfully, and insurance companies would perhaps start covering IVIG? Sounds like it is based specifically in OCD related to strep only, what with penicillian being the antibiotic they provide afterwards. They did not ask me anything about tics. Just OCD. Sarah & Samantha 5

Thank you Vickie :-) Well, just got off the phone, I guess we passed the very short screening, have set up for a longer phone screening tomorrow. They were very concerned about dates- what I have is a documented case of strep at 2.4 years old- and truthfully, everything did go downhill for us after that (but she was also exposed to strep as an infant, no documentation of this, nor was their a dx of strep as an infant, nor treatment) and they wanted dates for specific OCD symptoms starting after strep. I certainly had some OCD to talk about-- I guess we will see...not having done and IVIG or steriods before was a plus. I have no idea of their timeline of when they want to do this. And, of course, flying my dd5 who has major anxiety clear across the United States for a placebo is a concern for me... I'll update tomorrow after our 2nd screening. Sarah & Samantha 5

Hi, thank you- So, before she wanted to do a 5 minute screen with me, to see if we are eligable for a longer screen, I said I have a ? first. I asked: Is this a HD IVIG, or a low dose? Because it it my understanding that low dose IVIG will increase/not help at all with inflammation, but the HD actually is the IVIG that will decrease inflammation, and my daughter is all about the inflammation. She tried to look it up, said it was 1,000 per killigram? Is this the 1.0 low dose? My understanding (limited!) is HD IVIG is considered 1.5-2.0? She is double checking and calling me back. Please advise me if you can!