treating for strep...getting worse

[eljomom]

DD7 was positive for strep last week. No symptoms whatsoever, other than her tics had become NONSTOP (as opposed to all day long) the 10 days leading up to the culture. when this first started, titers were tested after 4 months (took that long to get a doc to believe something like pandas was valid) and were negative, as was a quick strep test. So in the year + that this started, never took her for a culture again. Went on a whim and took her, and bam. Positive. Sister had started a tic and separation anxiety the week before dd7 started worsening of tics.

 

Now she's been on Keflex for a week (dropped the 100 mg zithromax), and she seems to be getting worse. She is still blinking and scrunching nose, maybe a little less frequent, doing the mouth/tongue stretch, the arm stiffen/bend/finger spread, evening up touching, rocking head side to side, but has added smelling EVERYTHING again, and is now jumping a lot. Probably left something out...sigh.

 

Anyhow, I know symptoms can linger for a bit, so wondering if it's normal (well, is anything normal for pandas), for her symptoms to still be elevated after a week of abx? Should I see her coming back to normal baseline of ticcing all day, just not nonstop?

 

So frustrated after yesterdays appt. with Dr. L. Husband sat there....AGAIN....and said that things had "subsided" from last summers really intense onset. Subsided???? He's hardly around her, and pays no attention. I, on the other hand, am with her 24/7 (plus we homeschool) and see it ALL. The tics are not as obvious because they are DIFFERENT from last summer. So Dr. L hears him saying this, and we walk out, again, with orders, again, to see an ENT and get tonsils pulled, when this is our first documented strep. What about the immune component, I ask??? Well, she wants to address any possible underlying triggers. Just had to vent. Feel like dh and I are not playing on the same team.

[dcmom]

treating for the strep, making sure it is erradicated is essential.

 

But for my kids, this is not enough. We consistantly have to do something to stop autoimmene reaction.

 

I do think what Dr L says makes sense. Be sure to erradicated strep before doing a "big gun" like ivig. Both of my kids tonsils were infected- one had strep once, one twice- neither time the ENT could tell prior.

 

There is a method to her madness