Tattoomom

We put ds on a gluten free/casein free diet back in 2007 and he was on it faithfully until September 2008. During this time, he had very few tic episodes. His behavior/anxiety/OCD were the same. It's hard for me to contribute the decline in tics to the diet since he was completely tic free from Feb-Aug 08, eating whatever he wanted. I have noticed the Wii brings out his tics but only if he's already in tic mode. If he's in a tic free spell, it won't. It's crazy... I'm sure he's sensitive to environmental allergens, as am I. I try to keep our house as chemical free as possible and we try to eat as clean as possible. What have you noticed as a trigger?

Our son, now 8 years old, has always been a spirited child. We went through terrible 1, 2's, 3's & 4's with him. He was highly aggressive as a toddler (hitting, crying, tantrums) yet highly sensitive (hated tags in his shirt, loud noises, crowds, new places) He seemed to outgrow a lot of these issues with time. And then came the tics around age 5 1/2. He had a throat-clearing tic that lasted from Dec 06-Feb 07. He was very sick at the time it started, with a cold/cough, and we thought it was just from being sick. He then added eye blinking in March of 2008. The eye blinking was way worse than the throat-clearing ever was. He started out blinking all.day.long. He had strep titers done back in March 2007, 3 months after he had his first explosion of tics and was negative. (ASO was 7 DNASE-B was <60) He saw a Pediatric Neurologist in April 2007 who said it was transient childhood tics/anxiety disorder and recommended counseling and said it may or may not end up being Tourette Syndrome. He's waxed and waned, and even been completely tic free for 6 months at a time but then they seem to come back, usually during/after an illness. He developed a new eye roll tic in September, had Swine Flu in October and took Amoxicillan during the H1N1 for an ear infection. Ever since, he's started throat clearing and blinking again but added some new tics like finger flicking/touching finger tips (looks like he's trying to flick something off his finger), neck tic (looks like he's trying to crack his neck/stretch), shoulder tics, and he wipes his hands on his pants or the couch constantly and he just appears to be very nervous and fidgety. He constantly washes his hands but hates to dry them off. I've noticed him licking his hands this week... that is new. We have no confirmed family history of TS. We do have a whole lot of autoimmune disorders, several blood disorders (his baby sister has an autoimmune-blood disorder), ADHD, Anxiety, & Depression.

Does your dd have PANDAS?

No. Not at all. I had started to think that maybe his tics were just transient childhood tics since they were totally gone from Feb.-Aug. He's never had a positive throat culture and his titers were normal wayyyy back when this all started (in 2007) I have no clue what this is? TS? PANDAS???

That's where I stand... I know we can't live in a bubble but to knowingly go into a situation where you already know for a fact that someone has strep, well, that's a gamble. IMHO.

That makes sense, Vickie! Ds just has times where I think... "Wow! He seems better!!" and for a minute, I'm fooled into thinking it's a thing of the past and then my bubble deflates. I just don't understand the good streaks we have... It's such a tease!

I guess I just wonder how my son could have tics/OCD and then go 6 months tic free and then BLOW UP with tics & OCD after the H1N1 virus. His anxiety is constantly there no matter what. I just wondered if your PANDAS children ever took a "break" from symptoms?

Do PANDAS kids wax & wane with their symptoms, like TS, or is it more of a constant battle? I'm just wondering since my son is undiagnosed with no treatment, would he have a remission of symptoms, or is that only achieved by Abx? Is it always "there" and you just experience exacerbations? But you can always tell it's there? Does that make any sense?!

So I decided to give him (2) 200 mg. Ibuprofen today (he's 106 lbs) and I couldn't see any difference. Ironically, he seemed to tic more! But... that could have been because he was playing the Wii.

I am the Queen of Germaphobes already! My baby (15 months) has a compromised immune system due to a blood disorder, Autoimmune Neutropenia. She has no-to-low neutrophils and leaves her extremely susceptible to whatever she is exposed to. Any fever over 101, she has to go to the ER for blood draws & cultures & IV antibiotics (usually Rocephin) So, if it were me, personally I wouldn't go! But we're dealing with several issues so I am just extremely paranoid! Sorry you're having to make the decision... I've been there... it's never easy, and there's no "right" answer. You'll probably second guess yourself either way.

At least I'm not alone in this... (((hugs))) Hopefully we will find out some answers for our little guys soon!

Ritalin is a stimulant and therefore would make the tics much WORSE!!! Tics are often a side effect from those types of drugs and should never be prescribed to someone who already tics!

Granted, I have not been very faithful but the few times I've given it, I have not noticed any significant decrease in the tics.

And even though this is a "study", it still costs $400?!

But if it's positive, it definitely confirms PANDAS?

Sweet!

If the Can Kinase is negative, does that completely rule out PANDAS?

Are these hand movements considered a tic or an OCD?

She doesn't really offer a "diagnosis," I suppose she just thinks he's a stressed out little boy who needs relaxation and Cognitive Behavioral Therapy! Or she could be basing her opinion on the Neurologist that we saw in 2007 who said "It may or may not be Tourette Syndrome." I just started giving him Ibuprofen so we'll see if that helps.

Well, that's not really an option... I LURVE our Pediatrician, she's an MD but Holistic Physician also, which is why I'm surprised she's being so hesitant to try the abx. On top of not wanting another Ped. if we left the one we have, we'd never get back in, as they are no longer accepting new patients. I think I'm going to just have to BEG her to try the abx because you're right, what harm could it do?!

Same here.

My son, also 8 years old, sounds very similiar. He started ticcing in 2007 after a bout with an illness (no clue if it was strep or not) and he also just started Zoloft this month. So far, I haven't seen any improvement.

For some reason, our Pediatrician is under the impression that Tamiflu can make tics worse?! Our son had H1N1 in October and ever since, he's had an explosion of new tics and anxieties. He did NOT take Tamiflu as she said that would have made it worse! Glad your dd is improving!

I asked the Pediatrician last week if they'd be willing to do a trial run on antibiotics to see if it would help ds's tics,anxiety,ocd, etc... and the Ped. said she did not feel comfortable "Going into this blindly" to quote her. She's convinced it's not PANDAS because back in 2007 when this started, his ASO and DNASE-B were negative, as well as throat cultures. These tests were done 3 months after symptoms started. He also tested negative on rapid strep test last week, during a sore throat episode so she said he doesn't meet diagnostic criteria! What can I do? We really cannot afford to travel for help. We're in Jacksonville, Fl and the only DAN doctor here has a 1+ year long wait and doesn't accept insurance If I ordered the CAM kinase test, how will that help me? Are we qualified to be in the study since his tests were negative for strep?