tpotter

No...I don't think they regularly check for it, because most wouldn't think about the neuropsych symptoms, and if the dog is presenting as ill (such as lethargic, eyes glossed over,) many vets will just prescribe abx...the tests cost money, and most families don't want to bother. We didn't have ours checked specifically, either...just convinced the vet to treat long term, because abx had decreased the licking & other OCD type behavior. Also, when we first told him about the PANDAS (dog was getting a vaccine so he could go to the kennel, and I was concerned about live vaccines,) the vet totally understood from the start, and asked me to ask the neurologist if he should just treat the dog to be sure he wasn't a carrier! I don't know if all vets totally get it, but ours certainly does.

My personal opinion? Go for it. We started a 1 year round of IVIG's just when we were starting to tx Lyme, because insurance happened to approve it after a bitter fight (we didn't know we were dealing with Lyme also when we started trying to get the IVIG, and knew we had had good results in the past with IVIG and PEX.) I decided to go through with the IVIG, and am quite glad we did. For us, it has made a world of difference..really made some incredible differences with my children. I'll do it again if they need it in the future. But, since you have already done 15 months of lyme tx, I definitely think it's a great idea to go with the IVIG.

Oh yes...every time we have a flare up, our dog starts obsessing about licking the floor continuously, and his seizures worsen. We've convinced our vet to give him longer term abx, and having extra, I have been saving it for when he goes to the kennel (start him a day before, and go a few days after, because he always comes back sick!)

Another thought is...do you have a really good DAN dr nearby? They may have a better idea of what is going on.

You can also fly into Hartford, CT...about 1 1/2 hours away, I think.

Since it truly appears that this is something related to infection, I would highly recommend that you see if you can go across the border for tx (I would recommend Dr. B. or D. L, and there may be others now.) Although you seem to have it at bay, PANS only tends to get worse with time, and you want to have a PANS expert who knows what to do, and can do it, if necessary. It sounds like your pediatrician is quite receptive and open minded, which is wonderful, but based on rowingmom's response, it sounds like the doc's hands are tied when it comes to treatment. That's when things could become critical fast, and all the PANS specialists are backed up several months for appointments. I'd get in there now while it's not critical. Here's another thought. Will your child qualify for the NIMH study? Have you called? If she's accepted, everything is paid for. Here's the website: http://clinicaltrials.gov/ct2/show/NCT01281969

I agree. PANDAS flare or not, it certainly sounds like it's an issue. For the IEP, you can always write in that he gets the help when needed, if it turns out he has dyslexia.

Sending PM

Curious how one would test for this? DS16 has had a huge amount of "cardiac" problems over the years, including sudden tachycardia. 2 different cardiologists both believe it is infection triggered, but can't tell us more. LLMD and PANDAS specialists all know about it.

This is fantastic. Thank you for sharing.

Yes, pancreatitis is horribly painful. DS said he couldn't catch his breath.

Actually, I'm going to contradict the last statement...DS's ENT had him eating corn chips, because it helps the scab come off sooner, and he said that's what causes the pain. That being said, as sick as your son has been, I would jump feet first in at the beginning of the summer, and take it one day at a time. This may be a summer that you just can't plan. I would not consider a job, because there's too much chance he won't be able to follow through on it, and that would leave the people at the job in the lurch. Both my DS's went back to full life within a week, but if I had to do it again, I wouldn't do it that fast. Personally, I think their immune systems need to have a chance to improve before that. But, that's just my opinion.

Thank you.

Sorry...it's fixed.

We are now up to 3 cc (started at 2.5), and so far doing ok. I do suspect it is going to be for at least several months. Additionally, his holistic chiropractor was testing him the other day (manual muscle testing), and found that he needed a homeopathic remedy (I didn't know she did homeopathy, too.) He had been refusing to try homeopathy, because we thought he'd have to get off everything else, and he was afraid to do that (afraid he would regress.) So, he started "fire", and the first night, he slept like he hadn't slept in years. He said that in 3 days, he has had more dreams than he can remember (deep sleeping.) So, we're not sure what's from the "fire", and what's from the LDN, but doesn't seem to be herxing now, and something or something(s) are helping. Plus, we started back on the NAC.

We've also used it for years. Additionally, every time we get our holistic chiropractor to test it on DS, it always comes back as excellent for them. In addition to being cheaper than florastor, it also does not have lactose.

I actually did that 2 months ago, and my vet agreed (but he's also the one who totally "got it", when flareups got their worst, and we had just adopted the dog.) He's also the one who specifically said: "have the neurologist call me, and tell me what she wants me to do" (she wanted the dog shot up with penicillin! Now, I have learned that when i see the dog start licking the floor constantly, and having increased seizures, I suspect that it's the reason that DS16 is having a flare, and I start doggie on more abx. I haven't told vet (I had some azith left over from the dog), but I'm almost out of the abx, and he's getting ready to go into the kennel for a few days (I've also been putting him on just before to just after he gets out of the kennel, because he always picks something up. I swear this dog has PANDAS/DANDAS (Puppy Autoimmune.... or Doggie Autoimmune...) Now I know why we adopted him...he fits in just perfectly to the family! Just a word of caution, though. You need to be careful how much abx you are giving the dog. It is calculated by weight. If your vet has a problem, PM me, and my vet may agree to talk to your vet. Because he TOTALLY gets it.

Actually, I think you've hit the nail on the head. I don't think it's as much as the doctors missing the dx (including with strep and other infections,) but rather either: 1) being afraid of being strung up by insurance and other docs or 2) not knowing how to treat if they do dx. Our pediatrician told us 2 years ago that he could not and would not make diagnoses that he knew he was not comfortable treating. I can see his point, BUT, that means the disorder goes undiagnosed, and honestly, it's the primary care doctor's responsibility to do what is necessary to get the person diagnosed and treated, even if it's helping that family/person figure out where to go to get it. To not even mention the possibility, I find is negligence at the best, and malpractice at the worst. At the very least, it's ethically wrong, but it happens all the time This is why we are all stuck trying to figure it all out ourselves with help from a very small number of extremely brave and courageous physicians.

PM'd you.

I know it's been posted here before, but I can't find it, and want to do it on my DS19 who has not been taking abx in months. It would be nice to know if that's truly what's going on. He was diagnosed with it almost 2 years ago (had about 3-4 bands positive, and lots of symptoms,) but he can't take abx, because of repeated c-diff. So, I don't know what we'll do with the info (same problem with DH who actually tested positive on the WB, because he takes coumadin, and can't take abx pulsed or sporadically,) but I do want to know. Thanks

Sorry you're going through so much, but thank goodness you've now got answers. I'm pretty blown away that they would dx a 2 year old with bipolar. Never heard that one before BTW, which PANDAS doc are you going to...you can PM me. Just curious. Good luck, and I'll keep you and your child in my prayers.

I'll pm you when I get to my laptop. I have a list I compiled months ago from everyone.

ACtually, if you are already seeing Deb McCabe, I think it's Dr. B (LLMD) who works with her, and he's very good...that's who we use. Sounds like Deb is already treating? Personally, I'm going to respectfully disagree about having to wait for IVIG. If you and your doc think it might work, I would consider going for it. We are definitely treating for lyme, co-infections, strep...you name it. We've also done PEX and multiple IVIG's. My DS's wouldn't be 1/2 as far as they are if it hadn't been for the PEX and IVIG, as they helped with the overall immune system. PANDAS/PANS/PITAND is autoimmune, and many of these kids have to deal with that part of the problem, too. So, I would listen to what the docs are saying on this one (just my personal opinion.) I know some kids herx horribly with the IVIG, but many have gone on to improve. There's no way to know that anything we are doing is going to be THE answer, but for us, PEX and IVIG were lifesavers. But, I do agree that you need to definitely be treating the lyme and other infections, too.

Yes, DS16 regularly gets chronic nausea when he has strep. Goes away when treated properly (sometimes that has come down to IV abx for him.) That being said, I would also highly suggest that you test for c-diff, h-pylori, and giardia. DS19 lost 25 lbs, and we were told (even by gastro) that nothing was wrong. Turned out he had c-diff (forum member suggested it to me, and that's exactly what it was.) He has now had 3 separate c-diff flares, and cannot take abx anymore. The 17 yo may be able to do a breath test for the h-pylori. If not, all of them are stool cultures. I wouldn't assume that it's not there, but rather just test for them.