@maryangela WOW, thanks for this information. My husband was never on board with the PANDAS idea (still isn't, when I share the with him, he'll probably roll his eyes and call me paranoid!), but I still wonder if that has something to do with this. My nephew has TS and my son's tics don't look at all like his, although I understand tics are very variable from kid to kid. I'm so glad your son is almost fully recovered!
The fact that my son's movements started after a long illness and they wax and wane based on his illness, he gets respiratory issues probably more than most kids (we may look at undiagnosed food sensitivities), he has really bad dark circles under his eyes that seem to be worse the days he's ticcing more, and all of his movements center on his head and neck and generally sound like he's clearing his throat, lead my gut to say that there's underlying illness or an immune issue involved.
I would love to know where you took your son. Our traditional pediatrician continues to tell us that its nothing to worry about, and his aren't super severe so it's easy to brush it off. After talking with a friend who's DD was diagnosed with severe PANDAS, we saw Dr. Kovacevic in Lisle but we didn't come to any conclusion. Our DS has no psychological issues (does great in school, no anxiety, fears, OCD, ADHD, etc) and the typical antibiotics and steroid course didn't make a difference, so that steered us away from PANDAS. We were told the steroids and antibiotics would stop his tics but they didn't. And our pediatrician doesn't believe in PANDAS (which I don't understand) so we just stopped heading in that direction.
Thanks for reaching out. Hoping to hear from others who have seen the same thing.