Better, than worse!

[MOM2AMAZ2BOYS]

I'm still confused and concerned that we are heading down the wrong path. I was sure that we were dealing with Pandas/Pans and now I'm not so sure.

 

Our ds had a sudden onset of tics and anxiety in May. He started with neck jerk, followed by eye blink and roll, and facial grimaces. It was a month and a half later before strep antibodies and culture was found and treated with Azith, 5 day course. Tics diminished, but 2 days after that throat clearing began. This lasted few days and then neck jerk crept back in. Then we saw Dr. T, who put him on a longer course of Azith. After two weeks he seems to be worse with the neck jerks and we switched to Omnicef and an antiviral in case he was in a flare. After a week of this combo, he was almost back to almost baseline, maybe 90 percent. This was short lived. Second week in, still on same drugs combo, it crept back in. Now we have what I think is a snort, throat clear, eye blink, occasional neck jerk. This began while still on meds. He did not renew the antiviral but he was on this when it occurred.

 

I guess I'm confused as to why he could be in another flare if he was on both meds when the uptick happened. Now I'm not sure what to do. He did just start kindergarten 2 weeks ago. But again if he was on both meds, could he still flare?

 

We have no history of tics or tourettes in our family. What brought me down the pandas road is that he had eye blinking at 2 that we thought was transient tics. They went away and never returned for 2 and half years. NO OTHER TICS. I swear this is true. Not anything that even resembled one. Then this sudden onset years later. Even neuro said this is not the usual course of tourettes. In your opinion does this sound like PANDAS? Could he get better and it go away so fast?

[rowingmom]

DD13 had the same initial reaction to strep abx that you are seeing in your son.

 

The first round of PenVK resolved ticcing and other PANDAS symptoms within 3 days. She remained asymptomatic for the next 7 days while still on abx. Within 4 days of discontinuing treatment her ticcing returned.

 

The next round of PenVK worked immediately, but after 5 or so days of the 10 day course, ticcing started to return - even while on abx.

 

Whether the infections (that I now know to be bartonella and babesia) were not being addressed by PenVK, or whether she was having a herx at the end of the second round, I don't know. Perhaps her initial improvement was due to some anti-inflammatory action of the antibiotic.

 

Anyway, if you are not using the proper antibiotic for whichever infection is present, you can expect backsliding.

[MOM2AMAZ2BOYS]

So, we were on the Azith originally, and on it for two weeks. It could have been a herx, but by day 14 I just felt it wasn't working and then we switched to the Omnicef and antiviral. We did not stop them at all. We don't have many options, as he is allergic to Amox so all of that drug family is out.