peglem

ha ha...that's funny since we (Buster and I) actually think Kaplan's and Singer's purported PANDAS kids were actually tourettes. It probably doesn't help matters that neurologists (at least around here!) won't see a PANDAS kid that doesn't have tics. I would think it would be hard for them to call a severe OCD-only pandas kids "just a subset of tourettes"...I guess those kids are just spontaneously insane for no reason? Its a circular argument. They are spontaneously insane because it is hereditary....just look at those poor, insane parents who have convinced themselves that it is caused by a microbe...they just can't accept what they've passed on to their children through their genes. There must be some reason these people will not budge in the face of logical, scientific evidence. My guess is politics and money- isn't that always the way?

I've been wondering if steroids suppress the immune system or just the inflammatory response of the immune system? Wondering the same thing about zithromax. I've heard about immune modulating properties, but what exactly does that mean? How does it "modulate" (that means change, no?) the immune system?

Thank you for the replies, Buster. I did a little searching and it does seem like diminished binding of D2 receptor is associated with OCD, although not considered to be diagnostic, I think it may bolster my case so they at least don't think I'm imagining things. My daughter has never been an SSRI responder, so maybe if SSRI's do have an effect on D2 receptors, the antibodies have been blocking that effect? Just thinking out loud.

Buster, your posts always explain things so well! You mentioned the D2 receptor being involved in OCD. So, would antibodies to D2 indicate OCD? I'm asking because w/ my daughter being nonverbal and autistic (not a good candidate for CBT, given the communication problems), the things I see as OCD in her are identified by psychiatrists and neurologists as self stim and stereotypies...."normal autism". The only antibody elevated on her Cunningham study was the D2 (though her CamKinaseII was very high as well), so does this confirm OCD? What I see as her OCD is she'll engage in activities manically and become upset and unable to stop herself from doing them, whereas stims and stereotypies are supposed to be things that help with self regulation instead of increasing disregulation.

We switched to a stronger antibiotic.

I do swab if I see "streppy behavior", and my daughter tested + while on penVK. The things that signal strep in my daughter : It starts with a few days of bed wetting. Then rages, long rages, long frequent rages, often with OCD triggers. I do not test just for exposure, especially now that she's on zith.

I think there are many different scenarios here. My child did not present with an immune response to the constant strep and her body did not get rid of the strep on its own. Although, I have to qualify that statement a bit since it was several years before we figured out that strep was the culprit. I think that when it started, she was sick alot (doctors decided she had allergies) and she did have a lot of sinus and ear infections...she wasn't swabbed, but sometimes they would give her antibiotics based on clinical dx. By the time (age 10) we finally found the strep, she was having very few actual strep symptoms, just +swabs that correlated with deteriorating behavior. What the immunologist said is that kids with an immune deficiency get sick alot, much more frequently than normal and will get more intensely ill, because the immune system isn't fighting the infection efficiently. But, PANDAS seems to be autoimmune, which means they wouldn't necessarily get ill more frequently, just that exposure to strep increases the number of antibodies in the body that are cross reacting(attacking) with the basal ganglia. So, even if your child is able to fight off the actual strep infection, the presence of the antibodies is what causes the PANDAS, not the bacteria itself. Antibodies tend to persist in the body for awhile after the infection has been eradicated. So, I guess the answer to your question is it depends on what the child's immune status is, which is not the same from child to child, whether they have PANDAS or not.

Thanks for the response. I wonder if, in your case, the death of the bacteria was causing them to release toxins. But Allie was pretty stable on this regimen and if there was ever a problem, it was coming on her "off" days. Even the 1st day back on was good. I can't find anything to support that there would be any conflict or reaction between the zith and the LDN. I'm thinking next time we see her doctor I'll ask about switching her to a different abx, one that does not have immune modulating properties...LDN is supposed to modulate the immune system as well, so maybe there is a problem there. I wonder if we dropped the antibiotic altogether. I wanted to wait til she starts menstruation to do that, but I'm beginning to wonder if she even has a uterus!

It took us about 2 weeks to get emailed results and another 2 weeks to get the hard copy by snail mail.

My daughter has been on prophylactic zith for 2 years. She takes 250mg/day for 5 days, then has 7 days off. Before the zith, she had chronic strep that just never, ever cleared, with only behavioral symptoms. Once we started on this zith regimen, behaviors came back on about day 4 off and would resolve within the first couple days of being on it. Gradually, throughout the 1st year, she got to the point where her behaviors on "off days" was indistinguishable from "on days." But, at the beginning of July we started LDN. About 2 weeks into the LDN, I began to notice that the streppy-type behaviors are coming back, but not on the off days. It seems to come back on day1 of her 5 days on zith. On the whole, we've seen some nice improvements on the LDN: a reduction in the frequency, intensity and duration of SIBs, increased communication, increased cooperation and overall better mood. But, what's up with the zith seeming to bring on increases of OCD and erratic movements?

But, you can miss a dose of zith without losing protective coverage. I'd also start using Xylitol nasal spray with them. Its bacteriocidal.

My daughter (14 yo) has never had Prevnar. Her immune testing was done using the pneumovax.

This is my thoughts on the abx issue. If a child has chronic recurring strep that doesn't seem to be cleared by non-macrolid abx, it indicates that the source of the strep is from biofilms inside the body. These require zith or other macrolides- zith is the one that has been shown to be a "biofilm buster" in studies done with cystic fibrosis. On the other hand, if the source of the child's strep is external and from re-exposure, other antibiotics should work fine to prevent strep infections. I think my daughter was a biofilm child, so even without external exposure to strep, she was, in effect, reinfecting herself from internal biofilms. Zith was the only antibiotic that worked for her and it took at least a year on zith before she no longer showed behavioral symptoms between her "on zith" days. (she's on a 5 days on, 7days off regimin). I'm loath to switch to another phrophylaxis at this point, but its probably something I should consider, as I believe the biofilms have been cleared. I certainly can't speak for Dr. K, but I think the problem w/ zith is that friendly gut bacteria also form biofilms and those, of course would also be wiped out by zith. Other antibiotics will wipe out the "free" gut buddies in your gut, but if there is an untouched biofilm of good bacteria in your gut, then the gut can quickly be repopulated with good bacteria from the biofilm source.

No, its not a live vaccine and it doesn't have any "extra ingredients" besides saline. I looked it up before allowing her to get it. I don't think she had a reaction, but we were in the midst of episodes, so who knows. One of the reasons we ended up at the immunologist is because my daughters strep would not clear, even with antibiotics. Her pcp wanted to know why. Even without abx, her immune system should have been able to get over it. Also, she wasn't having an immune reaction (no inflamed throat, fever)-just behavior. The immunologist did not want to give the vax while she had strep or while she was on abx, so both times we got her checked for strep the day before the vax, and both times we had to reschedule for a day or 2 after the abx course was finished. At the time all this was going on we were also seeing some other specialists for other issues...That year she probably had an average of 3 appointments/week.

My daughter had the strep pneumonae test. They drew titers before immunizing to get a baseline. Then they immunize and retest after a few weeks. It gives them a measure of the immune response. My daughter had a very week response to the 1st immunization, so they repeated it and the second time she had a good response. They said that they had stimulated her immune system and it was working now. Its not. I'm not sure if they checked IgG subclasses or not.

Brian, that sounds so heart breaking! I've been faced with the "residential treatment" decision. I will not do it unless other family members are in danger, because I believe they will not be as careful with medication as I am and my kid has enough problems without feeling like we don't want her around anymore. That wouldn't be our reason for sending her, but I can imagine pretty well that's what she'd think. Maybe instead of you choosing a target, force him to choose one? We've been through many meds with my daughter. The SSRIs did nothing. Risperdal was good for a month or so, then made things worse...really, really worse. Lamictal has helped some- enough that we noticed improvement. Is your son still on antibiotics. Zith has made a huge difference for Allie-more even than the lamictal. We've been using LDN for the last 6 weeks (still on the lamictal and zith) and are seeing steady improvement in anxiety. We have not done IVIG, even if we could get it approved, I have no idea how I'd get her to tolerate it. And, she's nearly 15, so iffy whether it would even be worth the trouble. If you want to take a look at meds this website has some straight foward information on them, but it is very blunt: http://crazymeds.us/ My prayers are going up for you guys!

The same thing is going on here, I just got off the phone with a doctor in Phoenix. He said he did not believe in PANDAS..he is so closed minded about this. I no!! they don't have a clue what is going on with our kids, there are so many kids that have some kind of movement disorder. I am fed up! I what answers.........Why are there so many kids sick with this. Judy, my daughter sees a very good pediatrician in Phoenix, who does believe in PANDAS, but most the specialists he sends us to, do not. Do you bring your son to Phoenix for medical care? Anyway, I'm giving this doctor info and he'll usually do what I want as long as he feels its safe. If it is outside "standard medical protocol" he'll usually still do it as long as he has some reliable research (which he puts in her medical file) to justify it. Let me know if you want his name and phone #, I'll PM it to you.

I don't understand why they are doing this? It just seems like the studies on PANDAS by other researchers are way beyond making a correlation.

Hey, whatever works!

I'm not qualified to comment on whether you are crazy or not. As far as behavior modification (ABA has been a miserable failure for my child), my opinion is that it depends on the behavior you are trying to modify. If you are trying to get somebody not to sneeze or breathe or tic, then it will not work. However, if you are trying to get them to sneeze, breathe or tic in a different way, you might have a shot at that. My daughter has erratic fight or flight reactions with unknown triggers, apparently driven by some internal mechanism. I'd like her to stop that. She'd like to stop that. Everybody seems to agree it would be good to stop that....but, she can't stop. However, over the years (she's 14 now and this has been going on nearly her whole life) we/she have developed some things that can help make these episodes shorter and less intense. (haven't found meds that can do that yet, but we're open to trying that as well). You're right that there is no reasoning with them when they are acting up, and that's because what they are doing is NOT REASONABLE!! and they know it, too. If they don't know why this completely overwhelming storm takes possession of them, they certainly cannot be reasoned out of it. When it happens to my daughter, I do not try to talk about what is causing it (this sometimes makes it worse anyway). What seems to work the best for us is to 1st of all get her to a safe place where she won't hurt herself, or anybody else. She has violent outbursts during hers, so this is important. I approach with a "sorry this is happening to you" philosophy and try to set up some kind of regulatory pattern...chants, clapping, rocking, tapping, something rhythmic, tends to focus her brain/body away from the episode to automatically following a pattern that calms. My daughter cannot speak, so we don't discuss it, but I have explained to her that I know she doesn't want to lose control like that and I will help her when it happens. I hope, eventually, she'll be able to employ these methods for herself to gain self control when it happens...someday. But, it has just occurred to me that we might not be talking about the same thing when we say "behavior modification"....

I couldn't see anything but the initial post until I hit reply, so I copied it here. Cunningham did not offer any more details. I wonder if one of her other medications could have affected the results? What else could elevate Cam Kinase II ?

She just emphacized that the D2 was rather high, only 4 of the positives were that high=16000 at 120mins. Sorry for sidetracking the thread...I don't know how to move the post.

I just had another look at her results. The anti-lysoganglioside is higher than the negative control #, (at 120mins.=160, the neg. control # is 80). Same thing with the anti-tubulin, at 120mins.=500, whereas neg. control is 250). I don't think my daughter has had a real exacerbation in over a year(since starting prophylactic zith), but her baseline is not so great, so its hard to say. So, does that mean she does show some elevation?

So why isn't Cunningham testing for 24.3.1 w/ her study? I'm trying to make sense of all of this. My daughter's CaM KinaseII was in the SC range, but antilysoganglioside was not elevated. The only other elevation she had was the anti D2...does that mean she's convalescent? And I keep wondering if the blood levels correlate to brain levels? This is so confusing!

yes, 1 positive and 2 negs, but since prophylactic abx, have not had much cause to use it.