Now what to do? NONSTOP blinking is added....

[eljomom]

What do we do now? My dd7 has had tics since a high fever last June (over a year ago). Never do they stop. She had a few that started a couple months before the big explosion last June. Prior to that, some germ ocd, hyper, sep. anxi (all stuff I saw as "quirks"), clothing issues, etc. It's either 6-8 various tics all throughout the day, or now we have the tapping/evening up with some nose scrunching, but the eye blinking is NONSTOP again. NONSTOP!!! I swear it was just a week ago that I said to someone "if I ONLY had a kid with eyeblinking, I would be so happy." Eatin' those words. She has never had high titers. Augmentin was tried last November for a month, and I swear she got a little worse. Pandas doc switched her to zithromax....very low dose, and we've been getting the run-around with the doc ever since. Zith didn't help. She's mostly happy and functioning ( we homeschool), but tics and ocd'ish. About 5 weeks ago, her blinking got nonstop, and for lack of better things to do, took her for a strep test. Never positive before (well, never was swabbed all her life b/c they were always treating URI's with abx anyway). Low and behold, it was positive. Ped. switched to Keflex. AFter 10 days, re-swabbed. Negative. Talked him into keeping her on abx for a bit, per the ENT our pandas doc referred us to for tonsillectomy that I'm not sold on as a "needed" procedure. Tonsils were small. No titers. etc. So now the past 5 days or so, the eyeblinking is NONSTOP. Some quesions:

1) Would she swab negative since she is currently on a treatment dose of Keflex? Do antibiotics interfere with strep tests?

2) She fell and tore a big chunk of skin/flesh out of her knee over a week ago. Had to go to ER. They couldn't stitch it b/c it was too "damaged" so steri-stripped it after cleaning it out real well. Had to keep dry for a week. She is on Keflex, and it is not infected (checked in with ped. yesterday). Could she still be reacting to this tough?

3) 2 of my other kids are having a few tics now. WTF? No one is swabbing positive for strep. I don't want to go chasing around strep carriage if that'snot the only villian here. I just don't know anymore. I could take her for strep test, but really think it will be negative due to being on antibiotics. Antibiotics never helped us with symptoms anyways. So lost...........

[eljomom]

Those titers were run back in November, when we first had a phone consult with Dr. T. They were normal. Everything is just "normal" except for her.

We did have RAST allergy test done by ped.....there were many "flagged" allergens, but only in the Level 1 & 2 (on a scale of 0-6). Level 0 is Negative, Level 0/1 is Equivocal, then it says "Increasing levels of Specific IgE on Levels 1-6).

 

Still can't get any C3d, yeast, etc., immune complexes run, viral panel. Pandas doc says it wont' be of any value in treatment.

 

Pandas16---I think I remember you saying you had IVIG as a child and it was a bad experience, and you'd never do it again???? I may be mixing you up with someone else, but always wanted to find out why? I'm also so scared of steroids, since I've heard that they increase dopamine, and dopamine increases tics. Haave heard of kids doing a bit better on them for a very short period after, then tics, etc. getting worse than before the steroids. Same with tonsillectomy. It seems every chance to help her get better also has a chance of making her worse.

 

 

I'm sorry your daughter is suffering. Have you checked other things like mycoplasma?

[JJMom39]

Elijo, I'm so sorry this is such a rough time for you and your dd. Our ped has told us repeatedly that antibiotics can interfere with a swab and that a swab could be negative if a child is on antibiotics. But when my ds was fist diagnosed with PANDAS this winter he was on an antibiotic for a little while and then swabbed and the swab was positive. So it seems it can go either way.