Hi all, would love to have some educated input on what is going now with my 12 year old son. Obviously you will need to hear his backstory!
When 9 years old, my son started one day out of the blue with a small facial grimace. My husband and I just thought he was making faces, although the same one over and over, and of course told him to stop, which he he couldn't. I'll always remember this because we were at one of his first swim meets for the season on a Saturday, and I thought he was just nervous, and it was a nervous tic. Well, it didn't go away at all over the weekend, so Monday afternoon, after school, we are sitting in the pediatrician's office. Her take was that it was a transient tic, however, she blew me away by suggesting the idea of strep-related tics. I had obviously been scouring the internet looking for what this could be, and had read a couple of articles regarding PANDAS. So for the doctor to bring it up as a far out possibility was encouraging, in that she was up to date on what this tic could be. So, she did a throat culture, as well as bloodwork to look at ASO titers and Anti-DNase B antibodies. A couple of days later, the bloodwork comes back, and he's off the charts high on both of these values, although his culture came back negative. So, as a theory, she gave him a 10 day treatment course of amoxicillin. Within two days of starting the antibiotic, my son's tics completely stopped. Finished the medication, and all tics were gone, and stayed gone. For a year...
Next fall rolls around, and it happens again, only this time, instead of a facial grimace, it's eye rolling tics. Massive, major, looks horrifying, eye rolling tics. I take him back to the doctor, and surprisingly, this time, she just says it's tics and to wait it out. I let her talk me into this at the appt., but then got home and couldn't stop thinking, what if this is the same thing as last time??? So, I called up there and requested bloodwork to be done again on him. Long story short, they did the bloodwork, although it took forever because the lab didn't do one of the tests, and then when they did do it, apparently the office just filed it away, and never called me. Grr....anyway, values again come back super high. But this time she doesn't want to give me antibiotics, and I have to basically beg for a prescription. And this time, once again, the tics go away within a couple of days on the meds. But unlike the first time, the tics slowly start back once he finishes his prescription, and they increase, plateau, and finally start to fall off over the course of 4 to 6 weeks post medication. That brought us all the way through to January. Pediatrician sends him for an EEG, which comes back totally normal. So then she suggests a visit to Infectious Disease at the children's hospital, because she is out of her depth. So while waiting for that referral to go through, ID tells her that we need to see the neurologist there that deals with possible PANDAS. Great! I think, until I have to wait over 4 months to get an appointment with him. During those four months, I did get the pediatrician to agree to give him prophylactic amoxicillin to get him through to his appointment. My son does get some recurrent eye rolling tics over the course of those few months, but not terribly severe. By the time the appointment rolls around, he's currently baseline with no tics.
Have a long appt. with neurologist, and after 90 minutes, his conclusion is that my son doesn't have PANDAS, he has Tourette's. His feeling was that the elevated ASO and Anti-DNase B antibody levels were just "red herrings" (his term), and that we are on the totally wrong track. His first suggestion is to ditch the antibiotics, because those are harming him, and to basically just let his tics wax and wane as they will. And we could try cognitive behavioral therapy if we would like to try to find someone. I left that appointment really unhappy, and not buying into the Tourette's in any way. My son just did not exhibit those type of symptoms, in my opinion, and only got tics when around people that were sick.
So, second opinion with a different neurologist, a few months later. Son is still tic-free at this point. 90 minute appointment with second neurologist, and he come to the conclusion that while he cannot rule in or out the case for PANDAS, he would classify him as chronic tic disorder at the time. He did give me an emergency prophylactic dose of azithromycin 500mg once a week, should I feel the tics come back and are debilitating for him. I had never read of doing prophylactic dosing once a week, and still haven't.
So, fast forward to December of 2016 (this has been going on for two years now). Clearest case yet, in my opinion... son starts having minor eye rolling tics, which increase over a couple of days. Then he comes home from school with a fever, and I take a peek in his throat, and we're off to the doctor. Strep test positive, amoxicillin antibiotic given. Two days on antibiotic, tics totally gone. Finish rx, tics slowly start to come back, increase, plateau, and taper off over the course of about 2 to 3 weeks. From January to June of this year, we have had so many ups and downs with the tics coming and going based on illness in our house, his friends, etc.
Right now, out of the blue, my son started eye rolling tics again over the past weekend, and they are really really bad right now. Probably one of the worse times I've seen for him. I tried to talk to his pediatrician to see if we could put him on prophylactic antibiotic for a year, and see how that helps (or doesn't help) him, but suddenly she is not willing to write the prescription for "off label" purposes. So, I either need to go back to the neurologist (the second one, not the Tourette's guy), which is so hard to get an appt with, or try to get in to see Dr. Rossignol, who is nearby, but I'm sure will also take quite some time to get in to see. All the while, we are about to head out for a 3 week vacation.
I have been giving my son the following items, in the hopes something will help: NAC dissolvable tablets, copaiba oil mixed with manuka honey, Enhansa capsules (2), magnesium supplements, and essential oregano oil on his feet at night.
I'm exhausted by worrying about him so much, which I know all you parents are as well. I know our case would be considered "mild" by anyone's standards, and I get that, but to us, it feels huge. Watching my son not be able to keep his eyes still would break anyone's heart. I would love to hear anyone's words of advice! Thanks, and sorry for being so long-winded!