another child with overnight tics...so sad

[eljomom]

Well, we got back from the beach last wednesday night. my dd9, who is not diagnosed pandas, but who has had periods of throat clearing over the years, as well as headaches, and some evening/touching ocd over the past number of months, started doing a lot of eye blinking, stretching, scrunching on thursday. very frequent. and i feel like i could die. we still don't have dd7 free of tics and mild ocd after 7 months on low dose zith. at this point, it's as if we are just accepting a lifestyle of tourettes, even though cam k was 168 and 2 of 4 antineuronals were very high.

 

But now dd9? funny how i'm freaking out over throat clearing and eye tics, while i let dd7 have a couple tics for many, many months and blew it off as a phase like my oldest had many years ago, until the fever then overnight onset of over a dozen tics, sep. anx, ocd, etc....

 

So here we go. dd7 had no high titers....probably untreated strep for years, but not at time of sudden deterioration. but now with dd9, I don't want to wait. heading to new ped. to see if he'll do titers....just in case i finally have a cookie-cutter pandas case here (not likely, as we have resolved to calling dd7 pitand). just sick about this. and my husband still thinks it's all just a phase that will pass.

 

also, we did talk old ped. into labcorp western blot, and IgM Band 23 was positive. which is CDC negative. So I am pasting what I posted on the Lyme forum below, in case anyone here can chime in. seeing new ped at 2:15 today. hoping for titers. i do have an igenex kit and doubt he'd do it, but might see if he'll do w. blot. what about co-infections? i hear many don't use igenex for that? here is Lyme post:

 

"I have been on pandas forum for dd7 for over a year. She still has tics, and some ocd, after a year of sudden onset, which was preceeded by minor symptoms. On low dose zith. for 7 months. Had only w.blot igenex. was "negative" but still had some + bands. pandas doc said "move on. not lyme" last week another of my kids, who has had some off and on throat clearing, sep anx and ocd over the years, started with major eye blinking, stretching, scrunching tics last thursday. she had been doing some evening up/touching stuff for a few months. and my son is doing the touching too. all 3 of them get tick bites over the years. my oldest has had less tick bites...she is kid #4, who had a year of one major tic that resolved.

 

the latest child with issues has also complained of headaches off and on for over 3 years, and occasionally her chest hurts, throat, etc. finally convinced ped. to run w.blot, and only IgM Band 23 was positive (Labcorp). I am NOT one to be on the extreme end of treating Lyme without some sort of positive testing. I know, I know, it's clinical. But I do feel that some kids are being treated/overtreated with major drugs without ONLY a clinical diagnosis. And with Lyme symptoms mirroring so many other things, I hate to say, I'm not comfortable with that. I also know that there may be times when a kid was bitten years ago an untreated, and that regular Infectious Disease docs ONLY follow CDC guidelines, and don't believe in Igenex.

 

So I am looking for any recommendations for a ped. Lyme specialist who is middle-of-the-road. I have only heard of Dr. Levin in Falls church, VA and Dr. Beals/Debbie McCabe in D.C., and I am not totally comfortable with either of those options. Are there any other docs who are medically based (not over the top integravite/holisitic) anyone can recommend? I live in Warrenton, VA, so VA/MD/DC is within drive for us."

 

Thanks.

[fsilverpsych]

Hi. I just posted recently (not sure how to repost) on having "trouble lowering the azith. dose." It's in the recent archives. The reason I wanted to post was because you said your daughter is not tic-free or free of mild ocd on a low dose of azith. This sounds very similar to my son (age 6, dxd at 4.5). He does his absolute best (almost tic-free and almost ocd-free; and free of all associated sxs such as enuresis, separation anxiety, drawing deterioration, nighttime fears, etc.) when he stays on the full strength twice/day azith. (for his weight- I think 42 lbs, he is on 200 mg twice/day). The problem is everytime we try to wean to once/day, his tics/ocd/associated sxs return. His recent liver function tests were normal and I sometimes wonder why I am even bothering to try and wean to a prophylactic dose when it clearly does not work. All I know is full strength azith. has worked great for him...

 

Good luck,

Frannie