How much ticcing would you consider acceptable?

[Crunchfly]

I know. Weird question, right?

But tics have been my ds's primary symptom (mouth opening, jaw jutting, and nose scrunching/grimacing) and I don't know what the new level of "normal" should be. He has been on antibiotics since March, with a few minor increases that quickly resolved. He is at a level right now where I don't think anyone else notices the tics outside of family and one good friend that knows what to watch for. I see the tics primarily in only one or two situations, with only a stray one here and there otherwise.

 

I don't know how far to push with the docs. Of course, I would like them completely gone, but I don't know if this is a situation where I should be happy with 95%. I can accept and ignore them, if I can believe I am doing what's best for my ds. I just don't want to let it go if I shouldn't.

 

Does that make any sense?

[NYCMom]

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.

[MMC]

Tics are our Ds's primary issue as well, although a good bit of OCD has surfaced in the last 6 months. He has been struggling with PANDAS for over 4 years now. I know he would be happy if his tics would resolve 95%! We would be ecstatic. I think its rare to see PANDAS symptoms resolve 100% in kids...although, some have seen this, I know. Heck, I had a PANDAS-like illness as a kid (SC), and my symptoms are not totally resolved...90 to 95% I would say. So, some of this mess can stick with you for a long time. Most docs would say 95% is great...and they really don't know how to accurately advise how to clear to 100%. They may suggest try this, try that, but they really don't know. The brain is far too complex, and our kids vary too widely in genetic predispositions, immune systems, etc.

 

Our Dd's tics have resolved about 90% I would say, although she still has some OCD and ADD. She is 17, PANDAS started when she was 5. So, we hope to see the same for Ds. His PANDAS did not start until age 10, and he just turned 15.

[LNN]

My DS once had severe tics, along with many other severe symptoms. Over 4 yrs, we treated Pandas and Lyme and he finally got to a good place. In February, he started having physical compulsions - hard to say if it was OCD-driven or if you'd call them tics. But he was on 2 abx at the time. I added a third abx for 10 days and saw no change. So we went back to 2. By April, all other symptoms were gone and I started to suspect yeast. The candida antibody test came back negative and I dragged my feet on a stool test (just really tired at that point). Whatever was causing the tics, it seemed that it wasn't lyme or other bacterial infection. So we stopped all abx.

 

The tics waned for a time as I re-focused on methylation issues and I decided we could live with a few residual compulsions, hoping they'd disappear with time. Perhaps all the abx had damaged the gut and he needed time to heal. But then the tics started to ramp up and other kids started noticing. My DS started complaining that he couldn't stop himself, that it was driving him crazy. So last week, he started artimisinin, we did the poop test and he feels the compulsions lessening their grip. I came to realize that he only tics when he's fighting some sort of infection that releases toxins and he struggles to get rid of those toxins. He doesn't tic when everything is as it should be.

 

I guess my own take away is that my DS's tics are a sign things are not right. Yes, we can live with them when they're mild. But nothing says they'll stay mild and they can ramp up quickly. So I now view them as canaries in the coal mine. If your son is good at 95% and there are no other symptoms, then there's nothing wrong with saying you'll live with it. But I would keep an eye on it and make a mental list of things for your radar, like yeast, imbalances between copper/zinc, mold, etc.