NYCMom

We stopped for 2 yrs, but then ds contracted strep followed by Lyme so we've been back on prophylactics since. During the 2 yrs we just concentrated on reducing sugar, gluten, etc and took probiotics as often as we could remember. Not always 100% during that period but pretty darn close. dcmom - ditto for me, could you please pm me the neurologist in NY? thx.

It's so variable. We've seen flares last hours, days, weeks and months. The longer flares are usually infection triggered (strep & lyme), the shorter ones are most likely; exposure to infections in others, diet, stress, etc.

We were off abx for about a year, mild flares during that time, but pretty great in general. Then ds11 contracted Lyme about a year and a half ago, big flare, then strep, and we've been back on ever since.

I've got one more tip to add (three boys means at least one case of lice every year, bleh). One year we bought an electronic lice comb. Marvelous invention! Doesn't pick out nits, but zaps anything alive and has been a lifesaver. When there's lice in the classroom I use it to comb their hair everyday just in case.

Our ds has stomach and headache issues independent of any antibiotics he takes. I always attribute it to flares as it usually follows, or is preceded by, other exacerbation symptoms.

The way our ped expained it, when the brain is distracted (in this case tv or computer) and lets its guard down, the tics come out. It's no uncommon for our ds to tic more when he's relaxing at home. Especially after spending the day holding tics in.

Totally! You just described our situation exactly. But no antibiotics, ds10 had been off for over a year now. We're accepting the 95% and hoping 100% is coming. We've agreed that as long as the tics (and occasional loopiness, emotional lability and restlessness) are not interfering in his school and social life, then we will not seek additional therapy, testing etc. We have an great ped, believes in pandas and keeps a fairly close watch on ds. He agrees we're a mild case and doesn't pursue abx, etc anymore unless the tics get to be too much. At one point last year, an old head shaking tic recurred and we did put him back on abx briefly. Then ds contracted Lyme last summer, and again a spike in symptoms so we did an additional round of abx after the Lyme treatment. Our son speaks to us more openly about his pandas now and will tell us when symptoms are bothering him. We usually just try to tighten up his diet (reduce gluten, sugar, add supplements) until it passes.

Throat clearing was also one of our first symptoms. Came before what I considered to be sudden onset.

We did the Cunningham Study shortly after our ped positively dx PANDAS in our ds (2009). It was not necessary for treatment, our ped was fully on board and was already treating PANDAS in his practice, but was frankly more to satisfy my need for hard clinical data and to further educate myself on what we were facing. Our ds tested exactly as he presented; def PANDAS as summarized by Cunningham, but CAM K on the low end of PANDAS range, despite very high ASO titers (~800). Ds's symptoms have always been relatively mild compared to what I've heard from the families on this board. However, for us at the time they were quite alarming. Cunningham's results seemed to confirm where we stood compared to the PANDAS population. I'm glad we did it, it was another metric we could point to if needed and I'm pretty sure we caught him close to baseline as we tested within months of his sudden onset.

Hallelujah. Yes people you're on the right track! Thanks for posting Chemar.

I have a Masters in Mechanical Engineering. My husband studied architecture. My dad, uncle and grandfather were all pilots. Interesting Amy mentions Parkinson's, my dad had that too.

Funny, we get the degradation in handwriting with flares, but for some reason ds's math skills improve, like he moves another notch out on the autism spectrum.

Some of the first things we were told by our ped was that PANDAS occurred because of a genetic predisposition (clearly being explored by parents here through genetic testing etc.) and that often the mothers were good at math. I'm an engineer and my ds is also a bit of a math whiz. Maybe you have technical skills you don't recognize

We've had this one too. Though we're at a point (been off prophyl abx for over a year) where we just wait them out unless we suspect strep. It usually turns out that someone in school has strep and he's just reacting to the proximity.

Great article thanks!

We used Amox as a prophylactic for two years. We stopped prophylactics last year and now use omnicef (cefdinir) whenever ds has strep (2x). It seems to work great for us, PANDAS symptoms start to recede within 24 to 48 hours.

Yes! Us too! PANDAS caught within a week of sudden onset, 4 years ago. Treated with abx only (mild diet adjustments here and there when I could). Been off abx for over a year now, caught strep and then lyme during that time! But we made it through both. DS10 still has flares but milder and milder every time. We do not treat flares, just beef up probiotics and vitamins and try to keep him away from sugar. My kid is also incredibly intelligent, well liked by teachers and peers, tons of friends, no school or social issues. It still amazes me that no one else, including immediate family, could tell that anything was wrong. I however had gut wrenching panic attacks as I watched my child tic away, battle strange anxieties and have soul searing melt downs with every flare. So a mild case, caught early? Or a mild case because it was caught early? I couldn't say.

We also get very varied lengths of exacerbations, from a couple of weeks to a couple of months usually. This is without (diagnosed) infections tho, so I think my ds10 is often reacting to various outside exposures (school, siblings, etc.). I can almost always tell his teacher when someone in his class has strep before she even knows it. I also knew by his behavior this summer that he had contracted Lyme before his dr tested him (we live in lyme country). So we are now coming off of a much longer exacerbation because of it. That being said, he is 3+ years post diagnosis, was 2+ years on prophylactic abx and is now 1 year off all meds (besides the recent lyme treatment) and his ticcing and rage/emotional issues are waaaay less intense and lengthy than they used to be. We now vary between 80-99% including exacerbations.

I'm a native New Yorker with three boys (8,8,10). Agree with what others say about the Statue of Liberty but a great cheat to seeing it from afar is to take the (free!) Staten Island Ferry on a round trip. Great view of the statue from the ferry and beautiful harbor views in general. Just took my boys to dim sum in china town, which they love! It's a traditional weekend event and we love this place (http://www.jingfongny.com/). Just get there early (before 12pm) to avoid a 30-45min wait. Tho you can kill time like we do by wandering around the China Town shops. The Planetarium is a good suggestion, it's at the Museum of Natural History. A bit crowded on the weekends but still fun and if you have patience check out the Children's Discovery room at the museum, great for your ages but sometimes there's a wait to get in. The xmas tree is a good one, not too far from FAO Shwartz, near St Patrick's Cathedral, the Museum of Modern Art (not terrific for kids, but great for adults), and I hate to say it but Nintendo World which will suck them right in. The candy store someone mentioned is Dylan's. The xmas window displays at Sak's are also fun and right nearby. I have no hotel tips for you but friends have had great success with priceline. Just a general tip, especially with three young ones. Keep it simple, don't try to do too much. The city can be overwhelming and too much traveling around can make for very cranky kids. Hope you have a great time!

Encopresis - my son had it as well. Our PANDAS doc recommended a laxative.

As for the spinning, that's one of ours. DS10 is about 90% right so no complaints. But he's been flaring since right before school started and right now can't walk down the street without a pirouette or two