tpotter

I would also contact the NIMH at the following website. http://clinicaltrials.gov/ct2/show/NCT01281969 They have a study, and if you qualify, everything is paid for (diagnosis, treatment, etc., etc.) I would contact them tomorrow. They have specific criteria to qualify, and if you're interested in participating, you want to make certain you don't have your child take something that could disqualify her. Good luck, and I'm glad you found us. BTW...I would suggest that you post something on the PANDAS forum, since this is the OCD one. It doesn't cross reference.

Yes, unfortunately, pets can be carriers. Your DS was probably reacting. My vet is totally aware of my childrens' autoimmune stuff, and he actually "gets it" better than most human doctors around here. He gives us absolutely no trouble with abx when we suspect the dog has something. Your DS will probably be better now that the dog has been treated. And, yes, I would also test for lyme.

2 Pediatric Neurologists who we have seen think DS16's seizures are related to PANDAS. His EEG's are abnormal in the fronto-temporal lobes (epileptiform spikes), and this was with repeated eeg's, but they were never able to diagnose epilepsy. He is on 2 anti-seizure meds. They very much seem to be helping, as I can't remember a seizure episode since starting the 2nd one.

tpotter -- fascinating! you think you've gotten it under control with acupuncture??!! are you also taking meds? mind sharing what type -- weekly, semi-permanent? stunning! Yes, I have also been taking doxy, rifampin, tindamax, and azith (the LLMD thinks I also have bartonella, because of symptoms, and we know for certain that my son has it (even though his blood tests were negative,) because of the rash. Anyway, I got very sudden relief after the 2nd or 3rd tx of acupuncture. I did here a little (got some air hunger, that I hadn't gotten in 1 1/2 years since starting azith.) Everytime I try to decrease azith, though, I flair, so I don't think it's 100%, but it's pretty close. But, my LLMD did take out the doxy this last time! Now that allergies have gotten really bad, though, I'm having some trouble, but interestingly, it feels different than the mycoP did. I still have a pain in my right chest, but it's different...really feels more like allergy induced asthma, and I can control it with inhalers, which I couldn't do with the mycoP. I breathe with my mouth closed, deep breaths. No more coughing (I had a pesky cough for 3 years.) At my next Lung visit (with the pulmonologist), I'm going to ask him to see if the lungs actually look any different. He did say the last time he checked that it looked like there was permanent damage, but I really feel that much better. For the record, my son denies feeling any better since starting acupuncture, but honestly, I don't see him getting as sick any more, and I don't think he has a recollection of just how sick he was. I also think he's been herxing, and I keep telling him that. But, I'm letting him take off a week, and then we'll see. He said he gets a lot of relief from the chiropractor, and we found a good one locally. Also, keep in mind that DS has done IVIG multiple times in the past (stopped in Dec when the insurance ran out.) That helped amazingly well, too. And the PEX he had 2 years ago, worked even better. But, I actually had the possibility of getting IVIG through my lung specialist at a major local hospital (he said that since Dr. B. had found the same immune deficiency in me as in my kids, he would try to get it covered if I wanted. I had just started acupuncture at that time, and told him so. He never dished it, but said "go for it." I wanted to try it first. Now, I see no reason for IVIG for me (at least at this time, although with this disorder, I will never say never.) Accupuncture was weekly, but I will repeat if necessary. I found a Chinese guy 7 minutes from my house. 30 years experience. Found him in the yellow pages!

Same here. I had high IgM Mycop, but DS has had high IgG, and then it doubled when I got sick again. It's time to recheck his titers, so I can prove all this. I just truly feel that mycoP is the answer for him. I seem to have gotten mine under control with acupuncture...I feel amazingly better...almost 100%, but it doesn't seem to be helping him to the same degree as it was helping me, and maybe that's because I had an active infection, and his is just so chronic that we need something far more deeply penetrating.

Thank you, Vickie for posting this. Sounds really good.

I'm so glad for you that these 2 things are helping. I just want to point out, though, that mycoP can be a co-infection of lyme (that was my primary symptom, and I'm still fighting it). Also, minocycline is used to treat lyme and co-infections (our LLMD has used it with us when we couldn't tolerate doxy.) So, it is possible that you may also be dealing with lyme. it is a clinical dx, so even if the blood tests are negative, that doesn't mean you aren't dealing with Lyme. But, again, whatever works is all that matters, and I'm thrilled that you are getting relief.

We use Florastor and don't have any issues with it, but maybe you could have her drink 4-6 oz. of fluid with it. It may cause some gas the first couple of days. If you purchase the Florastor for kids - they are packets, and you could start with 1/2 packet. Unfortunately, I think it's a little more expensive than the capsules- because the box of packets is for less amount of days. Also, I just picked up a bottle of "Georges" Aloe Vera juice. I heard it helps with constipation. I purchased it for myself because I have severe constipation issues (IBS). It is clear/tasteless - I'll let you know if it helps. It was nine dollars at Whole Fields.

Dr. K. can also only make consult with drs if he hasn't seen your daughter. You may have to make an appointment to actually come down to the states and see the doctor. Keep in mind that unfortunately, most of us have had to resort to traveling to get the proper care for our kids. If you are getting that kind of response from your doctors, it doesn't sound like they are going to be very open to consulting with a specialist here (I hope I'm wrong, but.....) I'm going to PM you also.

Florastor has lactose in it, so anyone who has lactose intolerance, needs to be aware of that. Also, I found less expensive S. Boullardi at Vitamin Shoppe. We use Jarrow. Additionally, there's no question you should be using probiotics. Our LLMD insists that we use a 2nd probiotic as well. BTW, if there is c-diff, you need to stop the other abx until it is cleared. We used probiotics the whole time DS (who's had c-diff multiple times), but as always, we space it preferably 3 hours away from antibiotics.

Ditto on PowPow and DCMom. My DS16 has had the same kinds of rages (only no warning first, and we had to escape with our lives at times...literally) Same abnormal eegs (7 of them in the frontotemporal lobes). DS16 is now on Lamictal, and it helps tremendously, but he's also on another one as well. He's been sick for 8 years, and was only diagnosed 4 years ago. 3 separate neurologists have agreed that the seizures are probably related to his PANDAS, including Dr. L. I would call for that appointment today. One word of caution, though, make sure you leave her office with a followup appointment...at most 1 month apart from the first. You may not be able to get hold of her in the meantime, and you are going to want to know that you have followups coming. Also, make sure you have a pediatrician/family practice (whatever you use) who will followup, and hopefully be willing to "coordinate" care. They're hard to find, but even if you have one who "gets it", and doesn't fight you, and will at least run blood tests to determine if strep or any host of other infections may have come back, you are doing well. Also, again, about JHU. I know it's tempting to try them, but other than one doctor over there who actually helped write the white paper (and he's more of a researcher than a clinician), for the most part, JHU does not believe PANDAS exists. Same goes for CHOP (there's one, but she's limited as to what she can do, because she doesn't have much if any support from the hospital as a whole (btw...I'm not bashing, just stating a fact.) Dr. L. is not the only PANDAS doc, but she's the closest, and really knows what she's doing. Also, since you are dealing with seizure-like activity (remember, Lamictal can help with both seizures and as a mood stabilizer), I would recommend at least starting with a neurologist, and Dr. L. fits that bill. I would also suggest that you keep an open mind to the possibility of more than one infection-type (not just strep,) as many of us are finding that because of the immunity issues with this disorder, our children have been exposed to, and are suffering from more than one infection (even when it doesn't appear that way.) PM me if you want more information.

DS used to get these all the time, only they were everywhere...sometimes even described as feeling like a sword was put into his chest. We later found out they were related to Lyme, and since starting treatment, he rarely gets them anymore.

Now, you have explained my DS's palpitations and tachycardia (even the cardiologist said it's probably from infection, but we're really struggling to get him to even be able to do a minimal amount of exercise, because he keeps having palpitations again (and he's been getting treated for 1 1/2 years.) I told him that I think he's herxing, because it started up again after he started acupuncture (he keeps telling me that he doesn't think the acupuncture is working, but personally, I think he's just herding.) Thanks for the info on the vagus nerve.

Ask your vet, also about the bordetella vaccine (if you get that one.) It is a live vaccine. The first year our dog got it (he had to since we occasionally have to board him.) The vet told us to keep the kids as far away as possible for about a week. Well, the kids still got sick. Then, the vet told us there was a slightly less effective one (have to do it more often,) but it is a killed vaccine. Ask your vet about it. I don't know what we're going to do this year, because the dog had seizures following his last one (they're not sure it was from the vaccine, but we did cancel the 2nd shot he was going to get because of it.) Also, just like humans, make sure your dog isn't sick when you give the vaccines.

But, doesn't mean that he can't. I would ask him (our LLMD tested for it.)

Boy can I share those sentiments! I spent years on seizure meds I did not need (for my syncope episodes) and have been sick with the most random and various illnesses and symptoms over the years. Not once has a single doctor EVER suggested I get tested for Lyme until I took my son to see Dr. B. in CT. So thankful now, but man it sucks to have suffered so long. BTW...how's your son?

DS got 1 shot every week for 2 months, and has been doing them once every 2 weeks for the past 2 months. I have an appointment scheduled with the LLMD for Friday to see what next. Why do you need 2 shots? DS only gets one, and we were told to make sure it alternates cheeks each time :-) His Family Practice doc gives him the shots, because we are 3 hours away from the LLMD. **My LLMD orders the shots directly from the manufactor, and were just told last week they are no longer making the 2 ml shot- so I bought a box of 20 1 ml doses, to do each side, for 5 weeks. If I bought a higher dose (say 4 ml) and used 1/2, not sanitary enough even with the change of a needle. I did call around, some places do have stock left of the 2 ml doses, which I plan to buy in the next few weeks, so my next round will be each side 2x a week, at the 2 ml dose. I am assuming doses are based at Dr.'s discretion/weight. Not cheap, either. But I can't/won't do IV, and am under the impression this is the same/very comparable for getting across the blood brain barrier. I'm almost positive our's are 2 ml. We got them for quite sometime from our local pharmacist (yes, very expensive,) and then I got one of his 2 insurances to cover it (they should have been covering it all along...I need to find the time to submit to get refunded.) Anyway, now they are being sent directly to the doctor from a pharmacy that works directly with the insurance company.

DS got 1 shot every week for 2 months, and has been doing them once every 2 weeks for the past 2 months. I have an appointment scheduled with the LLMD for Friday to see what next. Why do you need 2 shots? DS only gets one, and we were told to make sure it alternates cheeks each time :-) His Family Practice doc gives him the shots, because we are 3 hours away from the LLMD.

Unfortunately, yes, kids can act on it, although it does sound like he's trying really hard not to. That being said, what other infections have you tested for? I would assume with Dr. B, you've probably tested for mycoP, but have you tested viruses, lyme, staph? Also, you may need a different abx...sounds like whatever he's taking isn't really cutting it. You mentioned what the prozac is or isn't doing, but what about the IVIG. What changes (good and bad) have you notice with that? Also, I hope you realize that prozac in children can cause depression and suicidal ideations (I presume possibly homicidal, too...if they also can become suicidal?) DS (now 16) confessed once to my DH that he felt like he was going to kill me, but he didn't want to (this was about 3 years before we knew he had PANDAS, and that it was OCD. Thank goodness there's so much more known now. I'll keep him in my prayers that things improve.

Print out the white paper that was just published by Dr. Swedo at the NIMH, the blog by Dr. Thomas Insel (director of NIMH), and the new PANDAS website. Highlight the parts where it describes the symptoms, the necessity of staying on long term abx, and anything else that may be appropriate. Also, since you are definitely suspecting Lyme and co-infections, I can't stress enough finding an LLMD (lyme specialist) who knows the protocol for treating lyme disease. Lyme is a clinical dx, so even if the tests come back negative (which they do many times,) it very well may be positive. Good luck, and sounds like you are on top of things. I'm glad you moved quickly to change drs. Sounds like you really needed to.

I totally get what you are saying. I also completely agree with S&S. Since your dd was on vanco for c-diff, does that mean that she's definitely positive for it? If so, can you get her regular doc to prescribe the vanco? Mine does. If you want a recommendation for LLMD, let me know (I don't know where you live, though.) What I really like about ours is that he does listen to everything I suggest. OCD probably flared on vanco, because she was herding, so it's not a bad thing. It's really important to get rid of the c-diff (mine DS19 has had it so many times that we had to stop all abx...we're now doing alternative for him.)

Swedo did comment on it in the press release that was issued. She said that PANS is an umbrella that includes infection and environmental triggers. PANDAS and PITAND still exist, and basically are infection triggered. I suspect they lumped tics under motor movements for PANS, and that may have been the only way to get this out, and past the beasts who fought so hard to mislead and keep the public from knowing about the whole disorder in the first place (yes, JHU, I am talking about you.)

I use xymogen IgG 2000, and have for about 8 or 9 months now. I was muscle tested for it. Neither of my children needed it, though. Was muscle testing used to determine either recommendation? Also, I like the go low, go slow.

Sounds like you did fine using the motrin to help, while the body is fighting the inflammation. Since he had a rash, if it's still warranted, I would consider giving the benedryl, too to fight the allergic reaction. Once the child gets the autoimmune response to strep, staph, lyme, viruses, or whatever, almost anything could trigger it.

I'm glad you're going to look at lyme and co-infections, because honestly, if doxy is working, that would lead me to believe you may very well be dealing with lyme (that's the main drug used for it.) That doesn't mean, though, that strep or other infections and/or environmental triggers are part of the picture.