peglem

When my daughter gets sick, she doesn't act sick. No lethargy, laying around, she gets extra, extra hyper! She fits the clinical dx for PANDAS (behavior associated with + strep tests). I was just wondering how many PANDAS kids have that same characteristic? Also, she never runs a fever, in fact her normal body temperature is @ 96.5.

It is my understanding that the MMR does not and never has contained thimerosol. It is a live vaccine. Thimerosol would kill it. I think the problem with the MMR is that you are expecting the immune system to respond to 3 things at once, in addition to the things it is normally fighting off.

Yes, that's it.

neurotypical.

My oldest daughter has sinus problems and benefits greatly from a nasal wash. I've also heard good things about neti pots. I get Xclear from my local CVS pharmacy (don't know if they all carry it or not). They keep it behind the pharmacy counter. I've also bought it at Sprouts. I've never been to a health food store that's heard of it. I imagine it would also be available at Whole Foods. Here is a site where you can locate local suppliers: http://www.xlear.com/

I don't know if any of those supplements can cause precocious puberty, but you may want to take him to an endocrinologist, have his thyroid and growth hormones checked. My severely autistic (and PANDAS) daughter has the opposite problem- Thank God, she's fourteen and just barely beginning to get pubic hair and breast buds. My oldest daughter went through precocious puberty, but she's NT.

Just making suppositions here: If your son has to breathe through his mouth, seems like that could cause some mouth/throat dryness, which would cause a little irritation, which could trigger tics. You may be onto something here. Do you know why your son has a stuffy nose? Is it allergies, asthma? My daughter used to do a jaw popping thing (maybe a tic) when she was stuffed up all the time. She was constantly stuffed up for years...since her tonsillectomy-no more. It didn't get rid of the strep problems, but sinus promblems are gone.

Oh, I definitely think there could be an autoimmune PANDAS, I just think my daughter's isn't(I have not given up my right to be wrong, tho) because when she saw the immunologist, he had trouble provoking an antibody response. Her histamine levels and IgE levels are low as well. It seems more likely that she's reacting to the toxins. I may be completely wrong, but that's my best guess, based on what I see with her. I think right now PANDAS is a temporal correlation between strep+ and sudden onset or sudden exacerbation of behaviors. I think there is room there for multiple etiologies.

Probiotics are actually good for the whole body. They are good bacteria that live in the digestive tract. They help us to digest food and absorb nutrients. They also help to keep intestinal yeast and and bad bacteria from taking over in the intestines. They are not specifically immune builders, though the immune system, like the rest of the body, will certainly benefit from good intestinal health. This guy sounds like a salesman. He's telling you things to get you in to his seminar and sell his products. If you have to double check everything he says for validity, you may as well skip his seminar and do your own reseach. Be careful, there are a lot of skeezbags out there ready to prey on the desperation of parents. Okay, they're not all skeezbags- some of them are just ignorant and fell for somebody else's sales pitch. I've been dealing with, and researching SERIOUS autism issues for ten years and have never, ever heard this radiation thing he talks about. And, honestly, you could have had some kind of yeast issues or subclinical infections during pregnancy that could have affected your child. But, you didn't do anything on purpose to do harm (in fact I'll bet you did a lot of good things on purpose for the health of your child). Ultimately, speculating on that at this point makes no difference. You just have to deal with the issues presently at hand.

I could do that...but I want to get her off antibiotics. I have this idea that her problems started with yeast...long, long ago. She doesn't seem to produce much in the way of antibodies. So, in keeping with my biofilm theory (which is why I think the zith is the only antibiotic that seems to work-but it could be antiinflammatory), if the zith has been able to wipe out the biofilms, then I should be able to eradicate the yeast and get her immune system working again. I don't believe my daughter's case is autoimmune because wouldn't she need to be producing antibodies to attack her basal ganglia? I think she is suffering from the toxins produced by the strep and yeast. Her pediatrician is very good about discussing these things with me and doing what we can. I dream about the day when my daughter will have an actual fever! Anyway, I want to give it a try- if it doesn't work, we'll have to figure out something else. I don't know if you remember my daughter's zith regimen. She gets 250mg/day for 5 days and then 7 days off. When we first started- streppy behaviors would begin returning on the 4th day off, by the 7th day off, she was pretty bad. Now, i don't see streppy behaviors until @ day six, but they are not as severe as they used to be. I'm looking for a period of time when I can't tell the difference in behavior when she's off or on. Then I'll feel really safe to try taking her off. BTW- I have no idea if the yeast problems are less w/ pennicillan or not. I don't see why they would be. (and yeast CAN participate in biofilms with bacteria!)

Well, it doesn't work very well for us! I feel like I'm walking a very thin line and I keep falling to one side or the other and getting back up on the line. Next summer, I want to try going off zith and really hitting the yeast hard. Sounds like a recipe for a crappy summer! Anyway, if the strep comes back, we can always add the zith back in. I just feel like I don't really have a shot at getting rid of the yeast as long as she's on antibiotics.

Thanks for the link, Buster. I do find biofilms so fascinating! It'll take me a while to digest all that though!

Okay, I just read EAmom's response (we posted at nearly the same time). I'm wondering if carrier state may be because the active strep is contained in biofilms which hide them from the bodies immune system. I use the analogy of the biofilm as the "mothership" which is cloaked. (perhaps I've seen too much Star Trek). However, some mobile units are launched by the mothership (to find food, or possibly new sites to colonize). The body's immune system makes short work of these, but as soon as they destoy some, more are sent out. Meanwhile the critters that are safe inside the mothership are happily living and excreting toxins, and the immune system is none the wiser! This would explain why many children do not have symptoms(= immune response) with a strep infection-the immune response is not triggered if the immune system cannot detect the pathogen. I wonder if this is what was happening with my daughter's chronic strep. ( I refuse to call it carrier state because that implies that it is benign, which it most certainly is not). About three days after each course of Ab, she'd test positive again & of course have the behavioral exacerbations that go with it. So far, there is no approved test for biofilms, but researchers at Northern Arizona University have invented a way to test for the chemicals that the biofilm critters use to communicate. (or is it the stuff that the "cloaking device" is made from?) Anyway, the test hasn't made it to market yet.

Michelle, I can tell you why Zith is preferred for CF. CF involves biofilms, "colonies" of pathogens that band together for mutual benefit. A hallmark of biofilms is that they produce a substance (can't remember what its called) that coats the biofilm. This coating allows the enclosed pathogens to hide from the body's immune system and protects them from immune attack. Zith is the only antibiotic that has demonstrated the ability to permeate the biofilm to destroy bacteria inside. PenVK, amoxicillan, augmentum, can only kill the bacteria that are living outside the biofilm. I think these are more often prescribed for kids, particularly long term, because they are safer than zith.

While I'm familiar with the IEP process as a parent, there has never been any doubt that my daughter needs an IEP. Its pretty obvious with her. But, I also have experience as a teacher, trying to get help for kids who are not failing miserably, but are barely keeping their heads above water. Its frustrating, even with parental support, its an ordeal trying to get the district to test and get with the program. All the while, the child is falling further and further behind. . . They almost always take a "wait and see" approach with kindergarteners. It might be helpful if your child can see a developmental pediatrician who will document areas of concern and make recommendations for accommodations. It kind of sounds like they're accusing you of munchausens (in an underhanded way). Have they completed the testing yet? If you disagree with the results (check wright's law to be sure) I believe you can have an independent evaluation done at school expense. If a 1st grader thinks the staff at school is mean, they are probably expecting him to do things that he cannot do, or to not do things he cannot help doing. For, instance- kids with poor impulse control are always getting into trouble and being punished, instead of being taught strategies for impulse control. And from a purely developmental standpoint, I agree with your son, a first grader's schoolday is too long.

I did some research on marinol and it seems like what alot of people are doing, because of the expense, is getting the prescription to justify THC showing up on blood tests and then just buying it on the streets anyway, because they can't afford the script. Me- I'm too afraid of getting caught!

Yeah, the valerian root stinks like crazy, but for some reason, my daughter has no problem taking it! I have considered actually, giving my daughter a few sips of wine, her anxiety is so bad...I do have a valium rx for her, but try to avoid using it as much as possible.

I was just wondering if chewing gum or sucking on a hard candy(I know- sugar!) might help to alleviate the licking a bit. Keeping her tongue busy with something else? Is there something she could carry with her to lick whenever she gets the urge? She could keep it in a baggie. I'm just trying to think of ways you could reshape the behavior to make it safer and maybe a little less bizarre looking to the rest of the world. As far as help with sleep/anxiety, valerian root works pretty well for my daughter. She's had major sleep issues all of her life. I do use melatonin with her as well, but the valerian will work w/o it. As far as the genetic component, it may be a genetic reaction to an environmental trigger. (Let's hope its not tomatoes-that would be hard for your Italian mother!)

The vaccine did not contain aluminum- I checked it out before agreeing to do this test. This whole process really confused me, because I was puzzled by the lack of concern when the 1st vaccine did not provoke a response. Then when the second did provoke a response, I was mystified when she was pronounced fixed. I think the reasoning may have been that they stimulated the TH2 side and got it responding...so now it works. As far as testing vaccine titers, the only one I saw on the lab sheet was tetanus, which tested "protective". It was thought(by the immunologist) that from this point foward her body would fight the strep. It did not. I began suspecting that my daughter's case was not autoimmune, because if you aren't producing antibodies very well, then what is attacking the body's own tissue. I thought autoimmune disease was when the immune system produced antibodies to self tissue. I suppose, though, something could be "marking" body tissues with non self antigens- triggering NK cells to attack. I guess I need to find out how the strep neurotoxins work. Or maybe I don't- what good would it do me, really? I mean, the azith is keeping the strep at bay, and I don't know how that info would help as far as treatment. On carrier state- I suspect that biofilms are involved in this. Thanks again, for doing my research for me- I agree that this does indicate a Th1 reaction to strep causing tissue damage.

I think I read somewhere that antibiotics can interfere with lyme testing, causing false negatives. You might want to check that before you do lymes testing.

I think I'd avoid the omnicef. There are plenty of other antibiotics you can use. I'd also look into celiacs. PANDAS tends to be difficult to get doctors to look at, but if you think the strep is a factor in the tics, I'd persue that as well. Both the celiacs and PANDAS would be immune system issues, so could be related.

Thank you so much for responding! My daughter is considered severely autistic- makes it really difficult to get doctors to look at medical issues because so many can't see past the autism. I think a lot of autistic kids have obsessive compulsive behaviors, many have abnormal movements and loads of anxiety. Also, gut problems are prevalent in autism and the reasearch seems to show immune system involement. Some people think a child can become autistic as a result of PANDAS. There does seem to be some overlap. I have to tell you, that I think autism/aspergers are worthless dx's. They are based solely on how the diagnostic clinician interprets outward behaviors. It has qualified my daughter for state medical assistance and special education (although it really doesn't seem all that special to me!- or educational for that matter!) I know a lot of people say "right diagnosis, right treatment." In my experience nobody really knows the right treatment for autism (well, I can think of an exception to that- in a minute) and the range of behaviors and impairment are so vast- even those who are considered "professionals" in the field have very little idea what to do to correct it. They tend to build a world where the child will be comfortable and unchallenged instead of teaching them to deal with the real world. So, treatments may differ, but will they be effective? I dunno. I used to be very optimistic about this...but, the more I deal with it, the more I realize her teachers just don't know what to do about it all. I don't know what to do about it, either, but I never persued or been given a degree in special education. They're paid and trained to be experts. If you need an aspergers dx to obtain services for your child- go for it, otherwise, I don't really think the label is helpful. That's just my opinion- Anyway, the only program I know of that actually treats the autism- that is, corrects the characteristics that make a person autistic (5 core deficits) is Relationship Development Intervention. It evaluates clients' social/emotional development, determines what they need and have methods for developing the neurology to correct the deficits. This program is about bringing about normal social/emotional development that has, for whatever reason not occured typically, so I don't see why it would have to be just for autistic people. For instance one of the things they work on is regulating attention and setting priorities on what is attended to. This is something ADD kids have trouble with, even if they aren't autistic. If you're interested this is the site: www.rdiconnect.com I'm wondering about your experience with Actos- how long was your son on it? Is it typical for kids to get worse before better? Or is that one of those sometimes things, where you're being urged to stick it out? My concern is that they are unable to pinpoint what's going on inside my child well enough to know whether this treatment makes sense for her. For sure though, if it made her worse and they couldn't explain why, or how it would improve, she'd be off it.

Omnicef gives my daughter tummy aches, so we don't use it. I can't, of course, give you any absolute answers, but, my opinion: I think its unlikely that the omnicef was a direct cause of tics, because it would have been completely out of her system 4 weeks later. Also, I believe that hyperkinesia is not the same thing as tics. I think it means hyperactive, but I didn't look it up- so grain of salt that one. How it may have caused tics, indirectly, is like any antibiotic, killing off good gut bacteria, which would encourage yeast overgrowth, which could cause tics. Or, I don't know what she was taking the omnicef for, but infections can cause tic exacerbations...too many variables here to find a definite culprit, I think.

Thanks for that article, Kim. So, its saying that maybe PANDAS is caused by toxins produced by strepA...but is it still autoimmune in that case? I mean are the toxins causing damage to the basal ganglia directly, or is the body producing antibodies to those toxins which are attacking the basal ganglia? When we saw the immunologist to try to figure out why my daughter was not clearing the strep, even with antibiotics (it came right back) He did a challenge with pneumovax: He pulled baseline titers (to I think it was @14 strains of pneumonia causing bacteria), then vaccinated. The 1st time there was almost no response to the vaccine- just a few strains had antibodies slightly above baseline, but not considered a successful response. On repeating the vaccine, the titer response was normal. So, he said he had fixed the problem- demonstrated that her immune system was now responding. But, the strep was still chronic w/ only behavioral symptoms, no immune response (as in inflammation/fever), and no elevated strep titers. So the immunologist pronounced her a carrier. But, I kept thinking if she has the bacteria in her body-they're there and living, eating and excreting, so how could they be harmless? They give off neurotoxins and we had a very strong correlation between the +strep and neurological symptoms. My daughter had many, many sinus problems when she was younger (when all her regression started)- nobody ever tested her for strep at that time. She was frequently not even given antibiotics for it. And since it seemed to be seasonal (on hindsight, I think it was correlated more to the school year than seasons) it was pronounced allergies. When she was finally tested for allergies years later- none showed up, not a thing. And while her tonsillectomy did not eradicate the strep like we had hoped, she almost never has sinus infections now (or maybe its the antibiotics?). So, that's my really long way of saying, no, she doesn't have inhaled allergies. My daughter also has had yeast problems which should be a Th1 trigger. So does that mean her Th1 side is deficient as well? Anyway, I don't want to try Actos just yet, but when more studies are done, I'll probably be toting them to her pediatrician, who will role his eyes (he loves me, really!) and try to figure out a way to justify prescribing it to a nondiabetic child.

I use MegaFlora for my daughter. She is also on nystatin. I do also use S. Boulardii occaisionally (but only because the nystatin kills s. boulardii, which is a yeast). I use the boulardii when she seems to be getting yeasty (hyperactivity w/ weepy episodes) and it seems to increase irritability- but I' not sure if that's yeast die off or a reaction to the boulardii. The irritability seems to be replaced by calm in about 48 hrs. Also, I've been unable to find S. boulardii in any stores locally- I order from Kirkmans.