evolveme

My son was diagnosed with PANDAS when he was 3yo, and now meets criteria for Tourette. Have no idea how we've gotten to this point, since his PANDAS episodes were becoming less frequent and we were observing less extreme behavior change. Have also seen what we now think is AD/HD over the last several months (as yet not formally diagnosed). Have started Vayarin recently (<2 weeks), so not sure yet what benefits, if any, we might see, but I'm now concerned that others have seen their kids' tics get worse while taking it! (Yours is not the only post claiming worsening tics.) We have experimented with different doses of guanfacine: 1mg takes the edge off his tics, and calms his behavior somewhat; 2mg made him whiny and he had meltdowns; 3mg we saw symptoms of low blood pressure (so stopped that pretty quickly!). (He just turned 8yo and weighs ~63lbs).

Anybody else's kid start with a dx of PANDAS at a young age and now meets criteria for TS? My son was dx with PANDAS at 2-3, after a months-long strep infection that refused to die until we had done 3 different oral abx, abx shots, and a tonsillectomy. Classic sudden-onset tics, OCD, anorexia, crazy behavior. We thought he was growing out of it (less frequent episodes, with less extreme behavior.) But now he's 8, and his (mild) tics have been present on and off for about a year, and in hindsight I've realized that what is likely AD/HD started creeping in last fall (yet to get an official dx). So far, I have yet to find a peds neuro who 1. accepts PANDAS as a legitimate diagnosis; 2. knows anything about PANDAS; and 3. is interested in figuring out the underlying cause of my son's non-stop tics rather than throwing him onto the neuropsych medication carnival ride. I just set up an appt with his ENT to culture his sinuses, since he has had recurrent sinusitis for years and I want to rule out an occult strep infection. It infuriates me that the PANDAS people are working independently of the TS people, when there's clearly similarities in presentation (albeit the etiology might be slightly different), and a growing body of research that shows that comorbid conditions are typical and not atypical of this population (OCD, AD/HD, anxiety, etc.). I've been told that TS kids' tics "wax and wane" (yes, I know that! but WHY????), that PANDAS and TS is treated the same way (NO, THEY'RE NOT!), and that there is no "cure" for TS (maybe not, but MY SON HAS PANDAS!). Grrrr... my mommy instincts tell me these MDs are full of sh** and my son's PANDAS is at the root of all this. OK, rant over. Anybody have similar experience and/or can offer any guidance?

In my albeit somewhat limited experience, psych evals are all very similar regardless of the underlying cause/dx, in that the psychologist/psychiatrist will ask some general questions to try to focus his her efforts into certain areas (eg. does the kid sound like s/he has AD/HD? OCD? Anxiety? etc.) and then complete evaluations specific to those potential diagnoses to see if your child meets criteria. Pretty standard stuff. My frustration at this point is with how MD/PhDs are proposing to treat my son, who got a diagnosis of PANDAS at age 2/3, but now meets criteria for Tourette because his tics have been more or less constant for a year or so. My local peds neuro doesn't recognize PANDAS (even suggested that TS and PANDAS are treated the same way!!!!) and all they want to do is put my son on the neuropsych medication carnival ride. The trick is finding somebody knowledgeable about PANDAS who wants to identify and treat the cause. Meds have their place, but in my humble opinion it's always better to figure out the cause and not just take meds to try to dampen the symptoms.

I realize I'm late to the party on this one, but only just officially joined the site and am searching through community posts for others with similar questions/issues. Came across yours, Mummadragon, and have to respond... (although I recognize that you've probably made progress since then). My story: son dx of PANDAS at 2/3 (now 8). Spent several years alternately trying to keep him strep free (tough, since exposure alone was enough to provoke PANDAS episode) and filling him with abx to deal with actual strep infection. Thought he was growing out of it, as his attacks became less frequent and behavior less extreme. And then BAM, tics returned and never went away. He has had tics, more-or-less constantly, for over a year. He always did have mild OCD as part of his PANDAS, along with anxiety. Then AD/HD-like behavior started creeping in slowly last fall (we have yet to get official dx). Tics that have just appeared (regardless of their cause) DO NOT meet criteria for Tourette. If the tics/other behavior were sudden-onset and associated with strep, you're likely dealing with PANDAS. A child has to have vocal and motor tics for a year or more to meet criteria for TS. And I HATE this diagnosis... not because I can't stand the idea that my son has TS (although I can't, and that's another story), but because it is a purely descriptive diagnosis that tells you NOTHING about the underlying cause. It's analogous to diagnosing a baby with colic - it is a description of behavior: crying for so many hours a day for so many days each week - and tells you NOTHING about why your baby is so miserable. If I were in your shoes (and I say this with the benefit of ~5 years of hindsight), I would say fight like crazy to do everything you can to find the underlying cause. Although there are a handful of researchers who are starting to associate PANDAS with TS, in general the PANDAS people do not work with the TS people, and they have entirely different approaches. I'm now in a fight with my local peds neurologist who refuses to acknowledge that my son's PANDAS has any association with what he recognizes as TS, and who wants to throw my son on to the neuropsych medication carnival ride. I do have him on a low dose of guanfacine (Intuiniv) to take the edge off his tics and AD/HD-like behavior pending a more certain diagnosis/way forwards. But don't imagine for one second that your typical run-of-the-mill neurologist will work with you to figure this out. Oh, and 10 days of abx after a major first attack like the one you described is not gonna cut it... Hope you've made progress in the last few months...