peglem

I had the lab draw the blood at the same time that my daughter was already getting a physician ordered draw. That way, the lab just had to fill the two study vials from the puncture that had to be done anyway. The lab did not charge us and the phlebotomist spun it for us as well (though I think she did this under the radar, w/o the lab manager knowing). If I'm reading the results correctly, I think my daughters CamKinaseII was in the SC range, the antibodies were about in the middle of the positive range, if I'm understanding correctly.

I got my results back today. Can anybody tell me what they mean? Cam KinaseII: 242% Then on the bottom of the report it has a chart for neg/positive controls for antibodies at various time intervals. I know those are just for comparison, but I'm wondering if that's a range of positive results? I mean is anything above the "neg" value considered positive?

In my daughter's case she did have tons of +strep tests, but titers were either normal or low. Most specialists wrote her off as a benign carrier. But her pediatrician knew that behaviors were correlated with +strep tests and, most importantly, antibiotics improved behavior...always, and they did a better job of improving behavior than psych meds. So, if the infection is undetectable, I'm thinking a trial with prophylactic antibiotics may demonstrate or rule out a PANDAS connection. Just my thoughts...

I'm so sorry. I remember how terrible I felt everytime the strep came back after a respite period. Hope things settle down for you again soon.

Maybe this explanation from Buster on another thread will help? http://www.latitudes.org/forums/index.php?...art=#entry34463

We started oral LDN on July 6th. The first week, I think she was having headaches in the morning and she got a runny nose. Slept restlessly every night and took long afternoon naps. By the beginning of the second week, runny nose had cleared up and she has been sleeping better. The really amazing thing is there have been no rages-zip, zero, nada for 3 days. It has been years since we've had this much respite from rages. I'm cautiously hopeful that this trend will continue.

I read somewhere, (sorry don't remember where) that low IgA can cause false negatives on celiacs test.

Yes, this is all very confusing. My understanding of the prophylactic antibiotics is that the main purpose is to prevent future exacerbations by preventing strep infections....But, my experience (coming from the chronic strep perspective) is that most antibiotics did not work for my daughter and she kept getting reinfections anyway. However, when we put her on azithromycin, there were immediate (within hours) improvements in behavior, anxiety and function. It keeps the strep at bay, and the improvements are maintained, but she has never gone back to as good and healthy as she was prePANDAS. I've never done IVIG because I can't afford to go outside of insurance and haven't found a specialist who will prescribe that course of treatment, and my daughter is a teenager, so possibly would not benefit as much from it as she would have at a younger age. If I can get it approved in the future, I'll still try it though, even if improvement is minimal, my child is so severely impaired that even a little help would make a big difference.

I'd notify the neuro for sure...eye rolling can be seizure activity. I'm not sure how much the eye doctor will be able to tell you.

My pediatrician's office does 2 swabs at the same time so if the rapid comes up negative they have one to send in for culture. The only problem is I wonder if sometimes both come back negative because they haven't done a thorough swab. I've never had a negative rapid come back positive on the culture. I guess a positive result on either is definite, but I feel like a negative result isn't definite because there can be other reasons for negative results (like the swab wasn't done properly).

Hmmm, well, what if the biofilm is in the sinuses? I guess my thoughts are that it looks like nothing on there will kill you or give you permanent SEs. I don't think they have any way of determining if there actually is a biofilm there (1st of all) and second, they have no way of knowing what microbes are involved in the alleged biofilm. Further, they have no way of determining if step #1 has actually caused a detachment. Just my take on it...my daughter has other, pretty severe neurological issues (maybe PANDAS related, but who knows) and over the years I've tried an awful lot of alternative methods/stategies that at least have been safe- most didn't work...so I'm a bit of a skeptic on things like this, so take my opinion with those grains... The switch from diflucan was because my daughter seemed to be getting tummy aches after the diflucan dose- she was taking one tablet/week- I think 200 or 250mg. She gets 3 doses of Nystantin a day, but seems to tolerate it better. Her zith regimen is 250mg/day for 5 days, then 7 days to allow it to clear from her system. Her pediatrician is concerned about it building up in her liver, so he wants her cleared between courses. We also check liver function about every 6 months.

We had immune testing done 2 or 3 years ago. the streptococcal pneumonia test (as it was explained to me anyway) does not measure immunity to strepA, but is a diagnostic test to check immune response. So the immunologist did a baseline test (low titers on all strains, but that could just mean the person has not been exposed to those). Then he vaxed her for those strains and pulled another titer test. She had a poor immune response, so he vaxed her again and the next test showed an adequate immune response...so he pronounced her "cured", claiming he got her immune system "jumpstarted" and said she should have fewer problems with the recurring strepA. It made no difference with her chronic strep A. @ 6 months later, her pediatrician sent her back to the immunologist, trying to get support for IVIG infusion and I made the immunologist call the pediatrician during our appointment (this was agreed upon in advance) so he could explain what we were looking for. The immunologist said he thought IVIG would not help because it would just be giving her the things she already has....so I struck out there. But, we really wanted to find out why my daughter's immune system was not getting rid of the strep and why she was seemingly not making antibodies to it either (low ASO and antiDnase + no immune reaction=inflammation or fever). We knew the strep was there and coming back rapidly after each course of Abx, so, why wasn't her immune system mounting a defense? We will be getting the Cunningham blood draw done on Monday, so that should give us more of an indication of what's going on.

I don't know what you mean by protocol. (I mean, I know what a protocol is, just didn't know there was one for eradicating strep biofilms) There was not a test to check for biofilms, but I theorized, due to my daughter's chronic strep that biofilm was a strong possibility. We used (and still are using) azithromycin for a prophyllactic Abx, because it has been shown to have the ability to penetrate the biofilm (studies done mostly in cystic fibrosis) to get at the microbes inside. I know that bacteria can cooperate with fungi and yeast in biofilms, besides Abx causing yeast infections, so we used antifungals(first diflucan and later switched to Nystatin which she is still on). This was just doing what made sense to her doc and I, not anybody's "protocol."

I am new to all of this. What is biofilm? Here's wikipedia's article: http://en.wikipedia.org/wiki/Biofilm

Well, I don't know what kind of reaction your son had to the augmentin, but it is known to cause a rash in people who have epstein barr virus (which can also cause a sore throat). But also, it seems like sometimes kids get PANDAS like reactions from triggers other than strep, anything that activates the immune system. It seems like strep is the initial sensitizing agent, but many PANDAS kids do have symptom exacerbations from any illness. While on the augmentin he got really hyper and aggressive, which is NOT at all like him. He was jumping and hitting and out of control. This went on for the 2 days he was on it, and then when we switched to a different one, the hyperactivity went away. I assumed it was the augmentin. I just checked rxlist.com and that is listed as a rare side effect and it does sound like it was caused by the augmentin. Wonder why?

Well, I don't know what kind of reaction your son had to the augmentin, but it is known to cause a rash in people who have epstein barr virus (which can also cause a sore throat). But also, it seems like sometimes kids get PANDAS like reactions from triggers other than strep, anything that activates the immune system. It seems like strep is the initial sensitizing agent, but many PANDAS kids do have symptom exacerbations from any illness.

I'd take him to a GI doc, because, even if it is neurological, a GI should at least be able to tell you that...find a GI doc who is also a DO if you can. Personally, I don't think its possible to have a psychological issue that is not neurological. And there isn't a system in the body that operates separately from the CNS. The GI tract comes close, it has enervation that can operate nearly independently of the CNS...seems like a good GI guy would be familiar with the enteric nervous system (or I'm way too optimistic! )

My daughter has low IgG and low IgA, so does that mean she is not a candidate for IVIG? Or is there a way to increase IgA?

Hi Lacy, My daughter's blood test did not indicate anything--but before testing Dr Cunningham had noted it probably would not as she was doing very well, on antibiotics and had been recently given a steroid burst. We did not expect to see anything, but it will serve as a baseline in case of another exacerbation. I explained the situation to our pediatrician and they were willing to do the blood draw in the office. I don't know whether my daughter's test will come back positive or not, but either way its good info to have. If it rules out an autoimmune problem, then we'll know to look for something else. My daughter has been severely impaired for a long time, and we've been trying to figure out things out for a long time, so, i'll be glad to know regardless of which way it goes.

My daughter had chronic strep- very stubborn. The only time she didn't test + was when she was on antibiotics. She didn't have abx for a couple of months after t&a and the chronic strep came raging back. She is now on prophylactic Zith (5day course w/ 7day breaks in between) and that has helped keep the streppies away. i think you'll need to use your best judgement here, everyone is so different. I think my daughter had years of untreated chronic strep that had already done a lot of damage before anybody caught on to what was happening. I'd like to get my daughter off the Abx, but right now, I'm too afraid of going back to "those days."

I was also wondering about this (and where I'm going to come up w/ $200.00). It was phrased as a request for a donation, but I wonder if they'll still send results w/o the donation. Its also the 1st time I've ever heard of paying to be in a study.

Thanks, I'm going to be trying it here in a few weeks for SIBs. Wish me success!

What was the dose?

. Are you serious? OMG, I can't believe this! Shouldn't she be teaching her little girl to be tolerant of things that people can't help? I mean, i could see it if his tic was to slug the person next to him or something. I'd be talking to that teacher and explaining tics and letting her know that it is mighty unholy to make a kid feel bad over something he can't help doing...not only that, but what do you think he'll do the next time he's bored in Sunday school and wants a break? Oooh, this makes me angry! I'm sorry that you and your son are having these problems...is he on proph. Abx? Do you have him strep tested whenever he has a resurgence of Sx's? I don't understand how you got IVIG based on one strep associated episode? Don't you need a series of strep related episodes to confirm dx? 'Course we have miles of history of strep related episodes and still have no officially confirmed dx.

I wonder if it would help to put her on a potty schedule? My oldest daughter had a lot of problems (and she was not PANDAS) with not getting the "urge" in time to make it to the bathroom. My other thought is that this could be related to PANDAS in a sensory way, where the signals from the body (ie full bladder, rectal pressure) are not being properly received or translated by the brain.