peglem

Well, lets see...if they were young ladies...but that can't be it. Wonder if its related to the length of time the antibodies stay active? Like with IVIG, they say about 4 weeks....but then, wouldn't they have to be exposed every 4 weeks for a very short time? Dunno.

It takes some getting used to, doesn't it? I remember shortly after we started the abx. My son was in the bathroom, washing up, getting ready for bed. We heard him make a noise, and both my husband and I responded almost instantaneously, shouting up to him, "What's wrong?" For months, he'd been battling contamination compulsions so badly that the bathroom was a "horror zone" for him, and we were accustomed to him shrieking, crying, sobbing, shouting at himself, etc. whenever he was in there. We thought we were facing that again. Imagine our surprise . . . delighted surprise . . . when he actually CHUCKLED and answered, "Nothing! I'm fine! I just thought of something funny!" Then he laughed some more! Until something tells me differently, I'm taking ALL of these new, calmer, easier going, cheerful behaviors as only good signs! We could all do with some good news and a positive energy feed! I never thought I'd be this weirded out over it. I mean its nice, but so different- like I'm not sure what to expect anymore. I wonder if it'll get even weirder after IVIG. Hope it lasts long enough for me to get used to it!

Interesting. Have you ever put her on abx? She has been on abx in the past for various things, such as urinary tract infections, but not since we started noticing the toe sucking. Not entirely sure how one would go about testing a dog for strep. Guess we could ask the vet . . . they'd be only too glad, I think, to milk us for some more $$$ for another procedure! Her health care is far more expensive than ours! It might be worth while to just see if you can get a course of abx for her.

Interesting. Have you ever put her on abx?

Remind me, is he on abx? Oh, wow, a sweet little baby girl- and a mommy with a lot on her plate and getting very little sleep. Do you have some help?

I think every psychiatrist we've ever seen suggested bipolar...but, heck, w/my kid so much is based on pure supposition, based on what we observe with no input from her.

Well, I guess I'm so unfamiliar with her being calm that it just seems like something must be wrong! The only times I've seen this kind of calm, and I'm talking EVER, is when she's been sick with a fever...maybe twice in the last 10 years!

Hmmm...wonder what the Cunningham results would be on an OCD dog?

My thought is that you should look for clinical evidence of PANDAS 1st- behaviors and movements associated with strep (or other pathogens?). I don't think the Cunningham test is meaningful w/o the clinical evidence because it has not been established if the Cunningham results are specific to PANDAS or if there are other conditions that may produce the same phenomena. Also, you are more likely to get beginning treatment (abx) based on strep evidence, not likely to happen w/ only Cunningham results.

My daughter has been in a waning trend for about the last month. Still has her moments, but overall, seems to be getting better. This week, we've seen a bit more aggression than in the previous 2 weeks- but still better than before this current upward trend- so, I'm holding my breath, hoping we won't have any major declines. Yesterday and today, though, she has fallen asleep after school- in the middle of "drawing". She's still sleeping well at night... so is this just part of healing, or what?

Oh, yes! And there seems to be a lot of variability...phases where different sensitivities come into play. My daughter suffered through an entire summer (in Phoenix, this is a very long season!) where she freaked every time the air conditioner came on. It took us a while to figure out what it was, because the rest of us don't even notice the sound. She has also had periods of the cough/sneeze sensitivity, male voices (talking at all)...mmmm, there have been many others, just can't think of them.

I don't have anything to add as far as advice- I agree with the advice that has already been given. Sorry you didn't get the answers and resolution you were depending on Dr.L to give. What a blow! But, I hope you'll stay here with us, not just to get support for yourself and your son, but also to share your journey with us- whether it turns out to be PANDAS or not. One of the things that makes this "club" so powerful is the sharing of experiences and knowledge...we all learn so much from each other and get strength from each other as well.

I really don't know what to make of all this. It quickly became so political- the whole issue has been muddied and tainted. It seems to me like Wakefield, at least at 1st (and possibly the whole time) was just responding to his patients parents over concerns that their children spiraled down into autism, with GI problems shortly after receiving the MMR vaccine. The parents could not find doctors who would look into this, or even believe what they had observed with their children. When Wakefield was willing to try to help them figure it out...a lot of parents flocked to him (does this sound familiar to anyone?)- and he was left with the decision to try to figure out what was going on, or stay with the status quo. I honestly can't say if his study was flawed, faked or whatever... having been through what I have with doctors refusing to help and disbelieving what I've seen with my own eyes and being afraid to try "controversial" remedies... Was Wakefield's head placed on the chopping block because his findings endangered the vaccine program, or is there merit to the claims of the "other side" that he manufactured results for cash? I just don't know.

Probably. My daughter doesn't have medical proof of strep before age 10, but I think she started in the 1st year of life- certainly by the time she began walking..

In December my daughter did 10 days of rifampin + full strength augmentin. The 1st 4 days she was sick (like you said- her body seemed to be fighting something), then 4 days of steady improvement, days 9, 10, and the 1st day after the rifampin were really a beautiful thing...seemed like a vacation w/o leaving home.

Thank you for the summary! I have been wondering what treatments you'd tried and what progress had been made.

That, but also, a ton of recent autism research that correlates autism with immune dysfunction. For those of you who may not know or remember, my 15 year old daughter is pretty severely affected w/ symptoms of autism. I was amazed when I came to this forum to hear lists of symptoms for PANDAS that so resemble autism characteristics...and I do think age of onset is the deciding factor in whether PANDAS kids are autistic or not. If onset is early enough, it interferes with development, causing developmental delay. (although, one could certainly argue in our case that it caused developmental stagnation). I do so wish I had a big, fat check to contribute. My fantasies these days involve the lottery and a PANDAS treatment slush fund to help families get treatment for their children.

So, they were sending out for cultures on positive rapids? We only sent for cultures if the rapid was neg.

Your zinc comment sent me searching....take a look at these-you may be onto something: http://www.ncbi.nlm.nih.gov/pubmed/3896271...ogdbfrom=pubmed http://www.ncbi.nlm.nih.gov/pubmed/1969150...mp;ordinalpos=4 http://www.ncbi.nlm.nih.gov/pubmed/1951946...mp;ordinalpos=7

My daughter has tested negative before- but she's really hard to swab and I'm pretty sure that frequently they do not get a very good specimen for culture, or its up in her sinuses. Still, negative swabs are in the minority. I don't know how the carrier is defined. I've never tested my ASO before, just not long ago, did once and it was high. Yes, after strep infection, ASO would be high. But I did not notice when I got the strep. I guess maybe my ASO is always high. Doctors here said maybe very high percent of adult have high ASO, if it does not show anything wrong with it, don't need to care about it ( I don't know if this is correct or not). I am just thinking not to infect my son if I have strep. My daughter is a carrier. Her ASO & AntiDnase have always tested low. I think carrier would be chronically culturing positive for strep, without active infection (symptoms of strep throat).

I don't know how the carrier is defined. I've never tested my ASO before, just not long ago, did once and it was high. Yes, after strep infection, ASO would be high. But I did not notice when I got the strep. I guess maybe my ASO is always high. Doctors here said maybe very high percent of adult have high ASO, if it does not show anything wrong with it, don't need to care about it ( I don't know if this is correct or not). I am just thinking not to infect my son if I have strep. My daughter is a carrier. Her ASO & AntiDnase have always tested low. I think carrier would be chronically culturing positive for strep, without active infection (symptoms of strep throat).

When my pediatrician called Dr. Cunningham she told him that very same thing.

Oh yes, they were resumed and at a higher dosage, with regained improvement.

Yes, huge backsliding when going off abx here...I'm curious, too, why Dr. K is not putting her back on the abx. Does he think there is something else going on, other than PANDAS? The lack of energy doesn't sound like a PANDAS symptom. (but maybe others have seen that?) I'd sure ask Dr.K what he's thinking here.

Haven't done IVIG yet, but the immunologist did tell us it is common to get a headache for a day or 2.