Hi Everyone:
I just joined this forum. My son is seeing Dr. T. We are also patients of Dr. G (nids) in California. We are following NIDS protocol but have recently started to think something PANDAS is going on too. My son never tested positive for any kind of strep. We saw Dr. T and he ran the whole gamut of PANDAS tests--12 vials of blood! All results were negative except for HHV6 which was still strongly positive (it's been positive every time we've checked, going as high as 600 about 6 months ago--we are combatting that currently with Famvir). So no lyme, no mycoplasma etc.....
Dr. T suggested that my son does not make antibodies to strep. The reason being that he did not show any antibodies to strep despite being exposed to strep many times (everyone in family has had it but him). So he put my son, who is 8, on a small dose of Zithromax for 10 days. Other medications that my son takes are Celexa (25 mg daily), Tenex ( 1/2 mg daily) and Nizoral.
The 10 day course of zithro did seem to reduce his constant stimming. Additionally, I would say that he's been much more interested and capable of "play". He's suddenly discovered play doh, cannot get enough of it! He's ready to play games and other things that he has never shown any interest in whatsoever. These have been good things....in forum members' opinions, could this be related to the zithromax?
But now for the negative stuff going on...every day around 10AM my son is having massive, intense temper tantrums at school where he is injuring himself and occasionally his teachers. He gets so incredibly mad that they have to isolate him in a separate room. Up until about 10AM he is fine, works amazingly well and is focused. He simply loses it, unprovoked. The tantrums were so bad last week that he was falling asleep afterwards because of the exertion. He was throwing about 2 at school and then one to two tantrums after school. Usually during transitions. His gymnastics teacher quit because he hit her in the nose by accident and gave her a nose bleed. Things are bad.
Has anyone experienced any interactions between Tenex or Celexa and Zithromax? My son gets Celexa and tenex around 8:30AM and Tenex again at 2PM. I'm starting to think that perhaps something happened during the time that he was on zithromax that intensified the Tenex or the Celexa? He's been off of the Zithro for exactly a week now--is it possible that an interaction would last beyond the time he was taking Zithromax?
I'm simply at a loss.....I guess another question would be, Do Pandas kids do badly on Tenex? We had an extremely negative experience with Intuniv, which is 1mg time release Tenex. My son had an immediate and extremely negative reaction to it. We ended up trying it twice per Dr. G's instructions and both times the reaction was so bad, we immediately pulled it. Perhaps that should have been a clue to not use Tenex either (although at a much milder dose)?
I'm trying to explore all avenues as to what is going on with my son because things are so bad right now. I've reached out to Dr. T but he's not available as I'm sure most of you know. Any insight into what could possibly going on with my son would be GREATLY appreciated!!!! Thank you!!!
