peglem

Oh, and where do the cytokines come from that trigger the Th0 cells to "pick sides"?

Well, mostly I want to check that I understand the info correctly (especially from the 2nd site- the Cheney article) and extrapolate some implications from it. I drew the diagram that was described in the article. My daughter has low ASO and low antiDnase titers. also zero IgE. So does this mean her th2 side is not working? Or did the fact that she had untreated strep for so long shut it down? (years, I think) In either case, it would seem that her Th2 side is not responding very well. The article mostly talked about overactive Th2 side...But I think I'm dealing with the opposite. The other thing I'm thinking is the Th2 side is the one that uses antibody producing cells to fight infection, so it would make sense that vaccines, in the sense that their objective is to stimulate antibody production, could easily trigger overactivity in the Th2 side, especially if you're vaccinating against multiple organisms at the same time. I hope if Michelle, or anybody else out there has used Actos, they will chime in here with some feedback.

This article is a study done in the autistic population, but it has to do with neuromodulation, and so I thought you all might find it interesting: http://www.jneuroinflammation.com/content/4/1/3 and in looking up terminology to better understand, I came across this: http://www.anapsid.org/cnd/diagnosis/cheneyis.html which gave me some Aha's into the high/low titers issues. Sure would like some feedback and discussion of these, if you get a chance.

I think it depends on the state which exemptions you can claim. Here in AZ there is a personal belief exemption. It is not advertised and the school nurses still send out statements that children cannot attend without vaccines. But, as soon as I ask for the exemption paperwork, they don't hassle me anymore. They do tell me (as though this would be a huge deal) that if the school has an outbreak of one of those diseases, I'll have to keep my child home. here is a site with info on exemptions: http://www.909shot.com/state-site/legal-exemptions.htm

Michele, have you tried valerian root for your son's anxiety? I find that it works nearly as well as valium for my daughter.

What you should expect and what you actually get are often 2 different things. It really depends on the neurologist. But, go prepared to request what you want with some good solid reasons: PET scan to rule out_________ and __________. Marinol to alleviate what symptoms and why you think it will be a good med for you. Do you homework. (or do the doctor's homework!)

The thing with a PANDAS dx is that is has not been widely recognized by the medical community or insurance companies as a legitimate disorder. There is no diagnostic code for it. I sometimes wish they'd just call it atypical syndenham's. (it seems to me like PANDAS is just a less severe form of Sydenham's chorea). My daughter's pcp believed the PANDAS dx, but felt he needed something to justify prescribing profilactic antibiotics to the insurance company and to the group practice he is a member of. So, even though she was getting antibiotics everytime she tested positive for strep (which was almost always-when she wasn't actually on antibiotics), He hesitated to go profilactic...felt he needed the +test to justify each time. As soon as we got a specialist (in this case a rheumatologist) to agree to profilactic antibiotics, her pcp became very comfortable with prescribing them...he had a back up in case it was questioned. The rheumatologist said that he'd love to dx her with PANDAS because its such a rare disorder (sometimes I think rare disorders are only rare because doctors never consider them) but she didn't have high ASO titers. (which are NOT neccessary according to dx criteria, but I'll bet he didn't know that) I just told him out of total frustration that I didn't care if it was PANDAS or not, we just know that it improves when she's on antibiotic...so he said, let's try profilactic antibiotics. Before, we were going to the dr. about every 2 to 3 weeks to get the strep test done and get more antibiotics. I'm rambling now, but the acronym PANDAS was applied to this disorder before the autoimmunity was proven. In fact, the autoimmune component was never proven. What they found was a temporal association between strep and the sudden onset of behaviors (tics, OCD) and that is the dx criteria. But, with the PANDAS acronym, most believe it is definately an autoimmune disorder and discount the possibility of PANDAS if the titers are not high. (the reason for titer testing is just to confirm a recent strep infection in case of a negative culture). My daughter had + strep tests up the yinyang...all associated with OCD behaviors (indeed, I knew from her behavior to bring her in for the strep test). So, why the low titers? And if it IS autoimmune, where are these antibodies that are supposed to be attacking the basal ganglia? I think, in my daughter's case, her immune system is not responding to the strep attack (no sore throats, inflamation or fevers) and the symptoms are a result of the neurotoxins given off by the strep bacteria themselves. I think the case may be different for those with elevated titers...There's more going on here, that has not been studied, but PANDAS research has largely been discontinued. And while I'm on a good ramble.....This whole "carrier" status for strep just doesn't make sense to me. If the strep bacteria are there, they are eating and giving off toxins...or they're dead. It seems to me if there is no immune response, then there's something wrong with the host's immune system...not some kind of magical "benign strep". The immune system is one complicated piece of machinery, and for all my efforts, I don't understand it very well...if anybody has a very good explanation for "carrier" status, I'd sincerely like to understand how this can be.

I'll tell you up front that I'm a bit skeptical about hair analysis...However, (and this is one of the reasons I'm skeptical) There was a study done testing mercury in hair samples: autism vs nt. The researchers were puzzled to find that hair mercury was lower in the autistic group vs controls. But, on follow up studies (used chelation challenge) the body mercury burden in autistic subjects was highly elevated compared to controls. They surmised that the low hair samples really indicated the inability of the autistic person to excrete mercury, causing build up in body cells. So, as far as mercury levels in the hair, I'd be much happier if it was high...low can mean either low exposure or poor excretion.

Something you may want to look at, being as seizures and tics seem to have many similar triggers, is the contrast between the text and the background. (light contrast seems to trigger my daughter). If you can reduce contrast by using a tinted page overlay, that may help. It could also be that switching eyes is affecting his visual processing-kinda confusing the brain about which sensory input needs processing. Does it help if you cover one eye?

It doesn't sound right to me. I frequently get erroneous bills for my daughter's care. Whenever I call, I tell them up front that I don't believe I owe because...(in your case, I paid each visit at the time of services.) I have yet to have anybody argue with me...Sometimes they explain and I do owe, but usually they tell me to disregard because I was billed in error.

Oooh, I know this one! Why yes, you can get pennicillan shots (they're supposed to be the equivalent of a 10 day course of antibiotics. Way back before we knew my daughter was PANDAS, but having a lot of strep issues, our doctor did try the shot for us (to avoid the gut problems=exactly). The problem is...the needle is gynormous and its a good size bolus of serum- given in the hiney, and after the 10 days, my daughter's strep was back anyway. When we first broached the idea of profilactic antibiotics, her ped suggested that she'd have to do that every14 days (I think to put me off the idea). Anyway, It was so, so, hard giving her that shot (and trying to keep her still long enough for the serum to be injected) that i opted not to do it again. I wish there was any easier way, I hate constantly fighting the yeasties. If it was a once or twice/year ordeal I might reconsider, but Allie's strep is chronic- back w/in days of the end of a course of antibiotics.

Well, that's a whole lot of cash! Will the course of treatment be different if inflammation shows up? It seems like you're already doing a lot, treatmentwise. For me, I think I'd rather try a course of antiinflammatories and see if it helps. I believe Susan Swedo is doing a trial of minocycline (but on regressive autism subjects, with LP's that indicate inflammation) to see if there is symptom resolution with that. 'course there is always the insurance company wanting a clear dx that would warrent the treatment, but even out of pocket, it would be cheaper than 3D MRI. I feel your desperation and sympathize, though. I sure have thrown away large chunks of money, trying to find answers and more importantly, relief.

My daughter does have a script for valium, 5 mg, as needed for aniety. I don't like to give it very often, but find that valerian root is a nice alternative (non addictive, no problems "coming off"). It promotes gaba and helps my daughter to relax. My daughter does self injure (significantly) or I would never consider benzos and nobody will counsel her (CBT) because she is nonverbal (not non communicative, but they don't know how to communicate with her). So, I'm slowly making progress getting her to self regulate- keeping herself safe, crying when she's upset, instead of herting herself. Try to find stategies and tools your child can use to combat the OCD.

Sarah, can you tell me more about the PANDAS/OCD panel? What tests are included in this?

Its probably because dramamine blocks acetylcholine, which is the nerve to muscle neurotransmitter, and must be balanced with dopamine and serotonin in the basal ganglia.

Female, age 13, #2. But, it didn't make tics or OCD worse- just mood because FO made her gassy and uncomfortable.

Yeast problems always make my daughter hyperactive (and often giggly) and also increases urination. I don't believe there is a real test for yeast overgrowth (some people swear by the spit in water test, but I can't get my child to spit) because candida yeast is normally found in the intestinal tract. I wonder if it would help to try an antifungal (there are natural antifungals). I just don't know, with your son's gastro problems if that would be okay or not. My daughter is on nystatin, a prescription antifungal, but she's also on prophilactic antibiotics so its a real balancing act. My daughter's streppy behaviors are mostly OCD issues, with tantrumming type behavior over things that she keeps repeating and can't stop...like playing a certain song over and over, even though it is the source of her upset. Or spinning something...she'll just keep doing it over and over, even though it is upsetting her, until I make it stop. Then she'll work through the tantrum and get over it. My daughter has had a lot of rapid strep tests, some of which came out negative when I KNOW she has strep (even though she is asymptomatic, I can tell from the behavior). I've never had the culture from a negative rapid strep come out positive...but I think sometimes the person who does the swab isn't getting a good enough sample. AND my daughter's strep titers have never been particularly high (in fact sometimes they've been below normal range), even when we've had tons of documented positive throat swabs. I believe my daughter's immune system is not responding well to fight the strep and her behavioral symptoms are the result of toxins produced by the strep.

Frequent urination is also a symptom of yeast infections.

I'd do ASO titers to check for recent strep infections.

If you go here, it has three sites that sell them. http://www.kk.org/cooltools/archives/000188.php

Valerian root helps my daughter with anxiety.

I'm sorry if I caused any bad feelings, it was not my intent to make anybody feel bad. I know you didn't mean it that way...you're not that kind of person. I just thought it needed a little clarification. Maybe I'm overly sensitive.

I just have to respond to this. There are plenty of "smart" kids who have IEPs. Learning disabilities do not equal low IQ. I get your point, that the child has to be disqualified for an IEP in order to get a 504 plan, but I object to the characterization that kids with IEPs are not smart.

I sure would like my daughter's immune system to be strong enough to fight it off for herself. I don't like her being on the antibiotic long term, only do it because we don't seem to have another solution right now. I hate constantly fighting yeast problems as a result. My feeling is that I would trial going off the antibiotic if there is indication that she doesn't need it. If symptoms come back, we can go back on it.

roxithromicin, according to wikipedia, is not available in the US. Clarithromicin seems to have a high side affect profile, including the dreaded Stevens-Johnson Syndrome. Erythromicin is high risk for gastrointestinal problems....So it appears to me that zithro is probably the safest of the macrolids. My daughter is on zithromax and it does worry me. She takes it for 5 days straight and then 7 days off. Currently we see symptoms return on days 6&7 of her off times. But that is improving. I think when I see several cycles where days 6&7 do not exhibit symptoms, I will try to discontinue the zith.