Ticcing like crazy...I'm going crazy...

[eljomom]

I know many of you will probably read this and think "Holy cow, she's still chewing that cud!" Well, I am. DD7 started tics last March, just 2 or 3. Looking back, it was after suspected walking pneumonia (myco p was negative 6 months later when checked). She did take an abx for it though in March. Wondering now if that was the start of a herx? Doubt it though...that really was just an aside.

So in June, high fever (not strep), then within a week, head to toe tics, sep. anxiety, etc. Had mild ocd from time she was around 5 (germ stuff, and clothing issues). Cam K was high, anti d1 and lyso were high.

 

We see Dr. L. Tried a month of Augmentin. Not better...maybe even worse. Switched to low doze zithromax in December...and here we are. STill ticcing. Sep. anxiety is a bit better. Germ stuff a bit better, but now does "evening up/tapping." Tics morph from one thing to another. Thought maybe there were a few months with lesser frequency and number...maybe?? But Dr. L does not see her as "severe" enough for IVIG. Haven't tried steroids...scared of making her worse, as I've heard with some kids with tics. Also, the effects seem to be temporary.

 

A couple weeks ago, my dd9 started doing a bunch of eyebrow/eye tic stuff. She's had occasional throat clearing over the years, and some severe separation anxiety, and also touches me and other things with both hands, etc. Then a few days after dd9 starting, my dd7 has now had almost NONSTOP eye and nose scrunching tics, with some mouth stuff, and her hand/arm stuff. It is killing me. Makes me so sad. I also notice that when she is watching TV tics are soooooo much worse. Anyone know why?

 

So here we sit, doing nothing. And I'm freaking out, trying to figure out why all of a sudden she is nonstop ticcing. Is it some source of inflammation? INfection? ( I did take dd9 in for myco p and strep culture and titers when she started a couple weeks ago, and all were negative). I just don't know anymore. HOw do you keep from running on the hamster wheel all the time? Especially when you are PITAND? Keep testing for infections over and over? Try to find sources of inflammation? See an allergist? An LLMD? Look at gut stuff? IT's all so overwhelming. Press for IVIG? I just don't see it being the magic bullet, especially for tics? Also, from what I understand from Swedo, it's most effective if used early and for initial onset.

 

Why would she go nuts with tics all of a sudden? Well, she never really stopped ticcing in any way, shape or form, but what the heck? For us, it's never easy, like just strep.

 

WEll, thanks for listening....any thoughts ...sorry for being a broken record.