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That is when I kind of established our own 3 day rule. It seemed like the bigger setbacks that occurred as part of the healing process wouldn't really remain bad for more than 3 days. Now, if regression in recovery lasted more than 3 days, I knew there was probably a trigger...like allergies for example. I have said in other threads, that when it's strep, he has had tell tale meltdowns that mark the beginning of a full blown strep triggered exacerbation. When those occur, I don't hesitate to get him to a doctor. In those moments, I know "it" is back. Yes, and it is proving out in our case, as well. There have been times when I've been almost completely demoralized because the healing trajectory seems to have stalled out. I've considered other interventions, researched other possibilities, thought about changing abx or even moving on to IVIG. And then, almost like an answer to my dilemma, DS will move ahead again on his own, down the road to recovery, without my having implemented any changes at all. I am, by my very nature, impatient, but PANDAS is a strict task-master, and I'm being forced to learn these days. Vickie, we have seen the same pattern with our son - without IVIG. So I agree, time is a key piece to the puzzle. That's why tracking/logging his behaviors has been so helpful to us. We can see those setbacks, but we can also look back over the long term and see how even those set backs are still better than where we were 2 months ago, 3 months ago, 6 months etc. By still being able to see the progress - however slow and prodding it may be - has helped us be a bit more patient than I think we'd be otherwise. Of course - as I say this, my son is at day care continuously taking off his clothes because they're "broken" and peeing every 15 minutes wherever he may be standing...so it's really hard to be patient!!! I have also seen slow, steady progress after an exacerbation. Truly the "saw tooth" pattern that Swedo talks about, with a sudden rise in symptoms with an exacerbation, and then a slow reduction in symptoms. However, when I see the "backward" times... if it is more than one day... then it usually signals in illness for me. It really is not strep for my son (from what I can tell). It is more likely allergies, sinus infection, or a basic cold. Last year was H1N1 and that was the start of a very long exacerbtion - not just a little blip.

About his improvement....so you've seen a gradual improvement? Any big setbacks or new problems arrising? Do you chart or journal his behaviors and progress? As long as I saw steady improvement (if with blips here and there), I'd probably stick with the Augmentin longer. If you feel like he's reaching a plateau, you can discuss changing the dose of the Augmentin perhaps? Overall, even if the Augmentin is helping, the road of recovery is long. In our house, we did not get our son back overnight. It took awhile. A lot of things factor into how long it can take and it does vary for each child. If you chart or journal, it may be time to read what you noted. Hopefully, you will see that more improvements ahve been made and you just didn't realize it. That was the case for us.

My son would have that generalized funk or "difference" about him plagued with rapid mood swings as well. Bipolar was once thrown at us as a possibility by a pediatrician who didn't kow what he was talking about. As to Red Head's reference about growling and channelling an evil spirit, "Exorcist Syndrome" has been discussed on here before and how it relates to PANDAS http://www.latitudes.org/forums/index.php?showtopic=6880&st=0&p=54882&hl=exorcist&fromsearch=1entry54882

That exerpt about Alba is interesting! I once wondered about John Travolta's son. First he had Kawasaki's, then autism.

My son gets hyper on a full dose of Carlsons Fish Oil Omega 3. I find if I give him slightly less, he's fine.

And it was the live oral polio, which can actally give kids polio. Also, it was distributed in schools. Sounds familiar(to the H1N1 last year)? History needs to learn from itself! Emerson, thank you!

Our school has "community supplies" which adds to germs! WE also have very specific lists due to community supplies and not much room to choose what to buy. Everyone, make sure you pack water bottles to avoid trips the water fountain, bubbler, whatever you call it in you region too!

In a sense, it is....oh, I don't know the word, interesting and neat to witness how everything is evolving. My first post on here was asking if anyone knew if allergies can worsen PANDAS symptoms. No one knew and had never heard of it. Now, it's talked about almost daily. In a sense, it makes me feel old, but it is also so nice to know that each of us in some way has helped the cause.

I also remember during my son's recovery that he would have a setback (enough to really make me nervous) and then a few days later bounce back, not only to where he was prior to the setback but even better. I wonder if anyone else experiened that without IVIG. With IVIG, I suppose it would be referred to as turning back the pages. Yet, my son did not have IVIG Yes, and it is proving out in our case, as well. There have been times when I've been almost completely demoralized because the healing trajectory seems to have stalled out. I've considered other interventions, researched other possibilities, thought about changing abx or even moving on to IVIG. And then, almost like an answer to my dilemma, DS will move ahead again on his own, down the road to recovery, without my having implemented any changes at all. I am, by my very nature, impatient, but PANDAS is a strict task-master, and I'm being forced to learn these days.

Cunningham never said her test was exclusive to strep. I assume she became intersted in studying PANDAS because of her background with the heart, RF, etc. But never said it was exclusive to strep. I missed this. When did she say this? I think it is so important to figure out ALL the things that cause a rise in CamK II and anti-neuronal antibodies. I am hoping her research is going in this direction.

It's just so hard to know when to allow time to take the lead and stop looking for trigger and treatments. If you decide to let time run its course, it can be a good thing or be hurtful esp if more microbes are hiding to hault full recovery. When I say what helped my son, I do always say antibiotics AND time. It's hard to let time do its thing, but it was part of the equation for him.

I see it as PANDAS falls under the umbrella of PITAND and is a subset of PITAND. It just gets catagorized as PANDAS do to strep being the original trigger. Perhaps it was coined as PANDAS just to "explain" why strep was the only illness being looked into at the time? So, technically, I (and this is just an opinion) would say all PANDAS kids are PITAND. Maybe it should be PITAND-S for strep PITAND-M for Mycoplasma, PITAND-U for unknown, etc.

Glad to hear all is well. I'm happy for you and your family!

The adult D-Hist is capsules. Here's a link to the company website http://www.orthomolecularproducts.com/ProductDetails.aspx?id=e3dd50ed-7f02-4d19-9e2a-907d09d57923 Then there's the Jr one which is for kids (the kids I would give it to are 6 and 9 yrs old)...the Junior ones are chewables. I'll probably buy it in the next couple weeks. I'm trying to find a store that carries it before getting it shipped.

My husband has birch allergies since he was kid and he never outgrew it, although I don't think it's as "strong" of an allergy now. As for the Quercetin, how much does your son weigh? I was looking it up for my kids and you might want to check the dosing you can give him. You might be able to give him more than the 100mg. I'm looking into Natural D-Hist JR for my kids. They also make a D-Hist for teens and adults. This includes Quercetin, Stinging Nettle, NAC, Vit C, and Bromelain. I believe Alyssa takes this brand, You can double check with her, if interested.

He's your Dad and was slightly embarassed, even though there was no reason to be. That statement makes me think this has happened before, but maybe not in awhile. Glad to hear he's doing better!

I don't have direct "ins" but I am usually "creative" in my way of contacting/finding people and tried each one multiple ways. To be honest, even if they did get my message and it sparked curiosity, I would have been floored to get an actual response. As everyone knows, celebrities are private and I think if they at all saw themselves in the description of the disorder, they would rather research in private than learn about it in the spotlight. Who knows, maybe there's some on here. That's the nice thing about online screen names as oppose to real names. If anyone else wants to try to contact celebrities, please do!

Welcome. Unfortunately sinus infections and even ear infections can be caused by strep bacteria. That sinus infection with the raw red throat is a red flag and he should have been tested for strep at that time. One may say that he was given an antibiotic so that would have cleared an infection, but it is not necessarily the case. PANDAS kids can be hard to clear of strep. It seems like the it's the minority of PANDAS kids that clear on amox and penicilin. The antibiotics that seem to have worked the best on this forum are Augmentin and Zithromax. However, other antibiotics have worked for some kids too like Keflex and Omnicef. Most kids need more than a 10 day course of antibiotics as well.You say he is on Clindamycin right now? Is he taking it well? Meaning kids usually don't like the taste of Clindamycin and spit it out or refuse it. If he's willing to take it, you can definitely try that first. Get all other family members checked for strep now as well, even if they have no symptoms. Here are some links you can read through. It may answer some questions or create new ones. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 PANDAS Flowchart http://www.latitudes.org/forums/index.php?showtopic=6688&hl= You may also want to chart your son's behaviors right now while and see if you see any patterns or improvements. Everone has their own way of doing this. Some (like me) journal them, some prefer a charting system. Here is a link to a charting system some use on here Buster's Charting System http://www.latitudes.org/forums/index.php?showtopic=6685&hl=

If I ever saw a faint strep test, I would assume it is strep.

I reached out to many celebrities with OCD and TS when doing the Pepsi project, including Jessica Alba, Howie Mandel, even Justin Timberlake amongst many more.

And Howie Mandel..I remember him saying he can remember the day his OCD started as a child.

Time to do happy dance for son #1! ....Hope the others feel better soon.

Einstein....He had OCD,possibly Aspergers. Mozart died of strep.

And the article in "Foods Matter" was coutesy of Latitudes online newsletter! http://www.foodsmatter.com/asd_autism/adhd_causes/articles/histamine_genetics_adhd.html Histamine, genetics and ADHD. A new study,explores a possible mechanism behind the link between artificial food additives and ADHD symptoms. Courtesy of Latitudes, the on-line newsletter of the excellent US Association for Comprehensive NeuroTherapy – and Guzo Communications. A new study, published in the American Journal of Psychiatry, explores a possible mechanism behind the link between artificial food additives and ADHD symptoms. “This study sheds light on how synthetic food dyes affect behaviour,” said Jane Hersey, director of the Feingold Association which helps special needs children. “It may also help solve the mystery of why these additives have a very powerful effect on some children and a milder effect on other kids.” The answer may lie in the children’s genetic makeup, according to the new study’s authors. They found that children with certain slight variations in the HNMT gene, which helps break down histamine in the body, have stronger behavioural reactions to food dyes than those without the variations. While histamine release is known to be involved in the sneezing, coughing and runny noses associated with the common cold, the authors noted that this compound also affects transmission of nerve signals in the brain. They explained that children with these gene variations had trouble degrading the histamine released by their bodies in response to the food additives and that the neurological effects caused by the excess histamine resulted in increased symptoms of attention deficit hyperactivity disorder (ADHD). The researchers pointed out that in addition to environmental toxins like artificial food additives, many foods and infections also increase histamine release. “This would explain the frequent claim that food allergy/intolerance is a cause of ADHD symptoms, and the effects of infections in aggravating aberrant behaviour,” they wrote. The authors also called for further research on the interaction of genes affecting neurological systems and environmental factors like diet, in order to better understand genetic influences on ADHD symptoms. This study was based on a highly acclaimed 2007 trial published in the British medical journal Lancet, which concluded that synthetic food dyes increase hyperactive behaviour in all children, not just those diagnosed with ADHD. The American Journal of Psychiatry study also cited a 2004 meta-analysis of 23 controlled trials (including 15 with exclusively hyperactive children), which showed that children’s behaviour is affected by artificial food dyes and called for an “ambitious vigil against avoidable harmful exposures.” This research led representatives from the Feingold Association and the Center for Science in the Public Interest to meet with Food and Drug Administration officials on March 1 in Washington, D.C., where they called for removal of synthetic dyes from the food supply or, at a minimum, warning labels. Hersey, whose eldest daughter was helped by the low-additive Feingold Diet, hopes that these efforts will result in the eventual disappearance of these chemicals. “The purpose of food dyes is strictly cosmetic — to make the foods more marketable,” she said. “Since they have no nutritional value and are actually harmful, they have no place in the foods we are feeding our kids.” References Howard AL, Robinson M, Smith GJ et al. ADHD is associated with a "Western" Dietary Pattern in Adolescents. Journal of Attention Disorders, 2010; (DOI: 10.1177/1087054710365990) Stevenson J, Sonuga-Barke E, McCann D, et al. The Role of Histamine Degradation Gene Polymorphisms in Moderating the Effects of Food Additives on Children’s ADHD Symptoms. American Journal of Psychiatry June 15 2010 (doi: 10.1176/appi.ajp.2010.09101529) McCann D, Barrett A, Cooper A, et al. Food additives and hyperactive behaviour in 3-year-old and 8/9-year-old children in the community: a randomised, double-blinded, placebo-controlled trial. Lancet Nov 2007;370(9598):1560-7. Schab DW, Trinh NT. Do artificial food colors promote hyperactivity in children with hyperactive syndromes? A meta-analysis of double-blind placebo-controlled trials. Journal of Developmental & Behavioral Pediatrics Dec 2004;25(6):423-434. "Modernising the rules on food additives and labelling of azo dyes," European Parliament, July 8, 2008.

I'm glad he's feeling better now! Have you ever asked him if he can remember if he had tics as a child or his history of strep? That stomach bug is going around everywhere. Are you daughters okay after seeing that?