peglem

Thanks, Kim. The questioning of things really helps me to process all this info swirling around in my head and I appreciate your help. My family is tired of my relentless pursuit of this, so good to have somebody willing to listen to me!

Okay that helps....So, what Cunningham's study is measuring is not how much CamK is there, but the extent to which it is activated by the antibodies? Is that right? (Oh, please be right!) But, of course that brings more questions (will I ever understand this?) So, when Cunningham says the CamK is elevated over the basal levels- like in my child-242%, was the basal determined specifically for my child by depleting her sample of IgG? Or is there a standard basal that everyone is compared to? If depleting IgG lowers CamK activation, then why would IVIG (which administers IgG, right?) be a helpful treatment? Forgive me if I'm asking too many questions, I just feel driven to make sense of this.

So, the blood samples we send to Cunningham-they're not actually finding the CamK, but an indicator of activation?

Hello. I have been watching posts for some time, trying to figure things out right along with everyone else. It is my understanding from an email I rec'd back from Dr. C that the Cam Kinase II is INSIDE the neurons--not coming from other parts of the body. It is in other parts of the body, but she explicitly stated that what we are talking about in PANDAS is inside the cell, not circulating outside of it. It is activated by some antibody (not a strep antibody) and causing the PANDAS symptoms. I would guess that these are what are crossing the BBB, not the Cam. Obviously, CaM Kinase hangs around awhile. Since it causes the release of dopamine, I would think this is why some of these PANDAS symptoms want to persist in so many kids. I'm only trying to figure out the puzzle like everyone else, so I could be all wet. What I am not wet about is the fact that Dr. C stated that the CaM is inside the neuron. Praying for a major breakthrough for our kids! Dawn But if the CamK is only inside the neurons, how is it being detected in a blood sample? There are neurons in circulating blood? I'm confused.

I have found that MANY doctors feel the same about probiotics with strep strains - that it's just a rumor. Here is my 2 cents: we were prescribed a probiotic with a strep strain in it and my son immediately (within 24 hours) had an awful PANDAS episode. It wasn't until 10 days later that I looked at the bottle and saw that there was a strep strain in it. I stopped it and gave him Oil of Oregano and 3 days later he was better. I have "spoken" with many women online who say they see the same problem with their kids who have PANDAS issues. I would STAY AWAY if I were you :-) Florastor is a brand name for the strain called Saccharomyces Boulardii. There are other brands. S. Boulardii is the best strain to give with antibiotics, b/c the antibiotic won't kill it. Also, if your child begins to develop symptoms of yeast (giggling, spacey, wetting the bed...those are my son's yeast symptoms) a 10 day round of Diflucan helps. This is all per my son's DAN doctor. Stephanie I just ordered some s boulardii from Kirkman's. They now include the info on their website that boulardii needs to be given separate from antifungals (diflucan, nystatin) because antifungals kill it. I'd wondered about that for awhile, since boulardii is a yeast-but a beneficial one.

My daughter has this problem as well....in a different way, she's developmentally delayed and cannot speak, but we'll see that she's interested in, or enjoying something (one year it was care bear figures) and we'll "encourage" it by supplying her with materials...and then it turns ugly...it takes over her life and she can't not engage, even when she doesn't want to and ends up kind of enslaved by it, and not enjoying it at all. So, I take it away, deal with a burst of incredible anxiety, and move on. But, my daughter's obsessions do not sound as sophisticated as your son's. I think you need to weigh how much it interferes w/ life vs how much it enhances life. If he isn't upset by it, I'd just work on containing it so that he still has life outside the obsession. And if it helps to "manage" him, well....you do need that as well.

My daughter is not on Diana's list, but she did the pneumococcal test (no previous vaccine) her immune system did respond to the second vaccine. She has not been tested for IgG subclass deficiency...she continues to get strepA, but the immunologist (2 years ago) decided she was "just a strep carrier". I'll see if I can get her pediatrician to test subclasses. Y'know, he's the only doc we've seen who really believes that there is something going on with her immune system and that she has PANDAS.

It is going to get better, really. You just hang in there till your husband gets back tomorrow...then go ahead and take some time to cry it all out. My prayers are going up for you!

Some of Buster's comments got me looking into this and what could cause it to not be such a barrier. I'm not good at interpreting a lot of jargon, so this sight appealed to me: http://faculty.washington.edu/chudler/bbb.html and from there: So, I went to Wikipedia and looked up each of the organs on that list. According to Wikipedia, these areas are devoid of BBB. I'm wondering if these areas may be the portals through which the antibodies are getting in to muck up the basal ganglia.

Buster, I find it interesting that your child's anti-lyso was lower during exacerbation than at the other times. Ideas on that? One other thing-we're testing circulating blood here, so I'm wondering if someone with an active strep infection could have test results indicative of PANDAS but not have PANDAS symptoms due to closed BBB?

My daughter has never been tested for vag. strep, but she's been treated for many assumed to be yeast infections. Her throat tests + for strep so she gets treatment for it anyway, so we don't have to go down there. Susan, I'm sorry to hear the strep is back...that news always makes me so sad.

I second that!

Your post made me curious. I poked around a bit and found this regarding high IgG4: http://rheumatology.oxfordjournals.org/cgi...t/full/ken336v1

Yup! Its a big problem at school (well, she's at a different school this year and they are better with her) when they are expected to just eat during mealtime, sitting down, at a table. Very early on my daughter had eating issues...the kind that seriously threatened her health, our focus was getting her to eat whenever, wherever, whatever we could. So, at home she pretty much eats little bits continually while she does other things...not conducive to family meal time, but, at least the rest of us can enjoy our meal.

I can hear your joy over your daughter's recovery loud and clear. Thanks for sharing that. Here's my opinion: Although I tend to take the everything-is-good-now-don't-mess-with-it approach, I think I'd be tempted to get some testing done, just in case you need a wellness profile as a reference in the future.....hope you don't ever need it, but, its easier to tell what's abnormal if you have a normal reference to compare it to.

Here's Allie's at the 120 minute mark, which is what the lab highlighted in the report: Lyso- 160 D1- 1000 D2-16,000 tubulin- 500 CamK- 242% About the BBB: I'm curious about what this is. I mean, obviously, the brain needs blood to function...so how does this barrier work? Is it kind of like a placenta, where the brain has a separate blood system that interfaces with the rest of the body supply? I'm trying to picture what it would mean to have it opened or closed? I should probably search, but if anybody already has some information and would like to share....that'd be nice.

We went through @ 5 years of these horrible rages before we even knew about the strep or the PANDAS. Psych meds either made it worse or did nothing at all. We were at the point where the safety of others in the home was at risk and considering placing my daughter outside of the home. I asked her pediatrician for tranquilizers....He reluctantly prescribed valium (I knew it could be addictive, but at that point I didn't care if she was addicted or not, as long as she could get some respite from these horrible rages.). I've used it sparingly, and she did not become addicted. She also does not become sedated on it and it helps. I so understand what you and your child are going through. I'm so sorry. Sending prayers up for you to find solutions.

Her prophylactic dose was 250mg/day for 5 days, then 7days rest. Yes, the NP put her on 500mg/day, for 5 days, and said if I don't see improvement in 2 days, call back and she'd give Keflex on top of the zith. After the 5 days of 500mg, she wants me to do 5 more of her 250mg dosage. She sees her regular ped. on October 1st- we'll have to make some decisions about her prophylaxis- also will discuss Cunningham study results. She should not be getting detectable strep while on prophylactics (that's what I think, anyway). I guess, in the final analysis, this is for the best. It was just such a shock, I thought the nightmare was over and she was on the mend.

I'll try, but just my perspective. I don't think PANDAS is an autism spectrum disorder. I think PANDAS is an immune disorder that can produce autistic behaviors. Here's my best analogy: Suppose you've injured your leg somehow. There is bruising, swelling, you limp. You can't run and you can only sleep in certain positions. The pain interferes with you sleeping very well at all. Now, supposing a group of psychiatrists gets together ( am picking on psychiatry because they tend to treat behavior without looking for underlying physical causes) and, observing all these traits pronounces it to be some kind of symdrome, named for the guy who spent years of his life observing and documenting people who have those traits in common. Let's call it Mymph Syndrome. That's autism- it defines a set of observable behaviors, but makes no allusion to causality. Now, Mymph Syndrome may be caused by a broken bone, injured ligaments, a muscle or bone infection, or probably a lot of other things....but the cause still wouldn't change the fact the person has demonstrated all the necessary things to qualify for a Mymph dx. So autism syndrome (in any case the defining characteristics are somewhat general, and leave out a lot of significant things that seem to be prevalent in autism) probably has many different causes. My daughter has been autistic from a young age...no medical professionals looked for an underlying cause until she was 10 years old. They seemed to accept that the symptoms she suffers from ARE the disease. My observation from reading on this board is that almost everything people here are seeing as PANDAS symptoms, are things that are prevalent in autism as well. I'm thinking PANDAS may be one of the underlying causes of autism.

Amazing! I'm so happy for you!

We went through 18 months of different antibiotics with it always coming back a few days after finishing a course. Did a tosillectomy...it came back. Finally got on phrophylactic penVK....it came back. Switched to prophylactic zithromax, January of 2008, and that has been working ever since....I thought we'd finally managed to get rid of it for good. Even if I could get IVIG or PEX approved through insurance, I just don't see how we could possibly get her through the procedure, and she's nearly 15 years old, so chances of that working are slim anyway. At this point, other than what the nurse practitioner is suggesting, I think prayer is my plan of action.

I can't believe it and I'm just sick with grief. My daughter banged her head on the edge of a table at school today and got a slight injury. The school insisted I get it checked out and send in a note clearing her to return to school...it was an over reaction, but as long as we were at the dr.s anyway, I had them do a swab (just really to reassure me that the demon strep was still gone). Her OCD has been amped a bit this week (3rd week back in school), but I was so certain that we were finished with strep, as long as we kept up the prophylaxis- which we have. It came back positive on the rapid....I cried, I'm weepy....its surreal. This can't be happening again!!!!!! We saw the nurse practitioner, and I have to say, she is very good. She's prescribed high dose zith and said if she's not doing better (with OCD) in 2 days, give a call back and she'll do Keflex on top of that. I'm quite certain that this is actually a demon taking the shape of a microbe....maybe I should be looking for an exorcist! (anybody know the insurance code to get exorcism covered by insurance? )

So, if the dr. thinks it is steroid withdrawal, why doesn't he try steroids to see if it helps. Good for your husband for not admitting to psych unit!

I understand, unfortunately. Mine cannot go out, though, so we are imprisonned at home. She goes to a sped school, though, so at least I get a break there. Hard to tell if these incidences are a result of poor impulse control or actual compulsions. Regular discipline doesn't seem to work, doesn't correct the behavior. Getting on prophylactic zith has helped alot. We've not done steroids. She has been on LDN for nearly 2 months now, and I have to say, I'm impressed with the improvement, though, her days on zith seem worse now. She's actually napping almost every afternoon now.

That sounds reasonable to me...and I'd skip the strep test, too. If it comes up neg, which it probably will given the abx, it may convince somebody that you don't need to treat.