Tattoomom

Oh boy, I left out A LOT! My mom, grandma and sister all have Restless Leg Syndrome. My entire family is swimming in Auto-Immune disorders- including my 2 year old- she has an Auto-Immune blood disorder. My family has Type 1 diabetes, Celiac Disease, Autoimmune Thyroid, Fibromyalgia, and my daughter has Auto-Immune Neutropenia.

My husband remembers having a vocal tic as a child that went away and never came back. He does have some OCD as an adult. My family has OCD & anxiety disorders. I suffer from anxiety/panic myself. Both sides have alcoholism. Other than my husband having 1 tic as a child, we don't know of any tics in the immediate family. A Great-Aunt is suspected of having some motor tics but never diagnosed with anything. Another weird tid-bit... I KEPT strep-throat as a child. I had it over and over and over again until they took out my tonsils when I was 13. Then I didn't get it again until an adult. I've had it a few times as an adult. This may all be useless information but just wondering how our families compare?

Wow!! That's wonderful that she's been tic free for 4 months!! That's the other thing with my son that made me question the TS diagnosis... he will go MONTHS tic free and then BAM! He will tic. Then break again. It's not constant. My husband experienced a vocal tic as a child that was transient; went away and never came back. He definitely didn't have Tourette's but it makes me wonder if he has a gene?

TatooMoom - That is the million dollar questions-- and (quite honestly) the experts have spent several years battling this out in the literature with research studies. For me, PANDAS was more fitting for my son because his symptoms always flaired very suddenly with sinusitis, and often his ONLY symptom of sinusits was behavioral changes (which was then confirmed with sinus ct scan). Also, his behaviors always improved with antibiotics.Plus - he had symptoms that are not usually associate with tourette, like sudden on set urinary frequency, separation anxiety at night, handwriting decline, and loss of math skills. Finally, we had his blood drawn and sent to Dr. Cunningham's lab for testing in her research study. It was costly, but worth it for us, because the blood test showed that the antibodies in my son's blood reacted with neurons in the same range as other kids with PANDAS - while kids with Tics, OCD, and ADHD without PANDAS did not react the same way. This is not an FDA approved blood test for PANDAS, but seeing my son's numbers in the PANDAS rage affirmed what I had been suspecting for years. Thanks for the info! BOTH of my kids have experienced sudden on set urinary frequency and separation anxiety at night. Interesting...

That's what I thought, too! But when I called, the nurse said she'd talk to the dr. and call me back. When she called back, she gave me an appt. for next week! I'm wondering if we've missed the window for the positive rapid strep test anyway, since her symptoms flared up quite a while ago?

So how do they know it's PANDAS and not Tourette's? Just wondering if my son's TS diagnosis is wrong now that his sister has tics/OCD associated with strep?

My son's tics DEFINITELY increase when his sister has strep. We've noticed that several times. Our Pediatrician is awesome enough to treat him when she has a strep infection and the abx help his tics tremendously. I just wonder how common it is to have 2 siblings with Tourette's v/s 2 kids with PANDAS?

My husband thinks he had a tic as a child. He remembers doing a clicking sound. It was very short lived so I suppose it would be classified transient. Other than that, his Aunt, so my children's Great-Aunt also has a few minor tics and hers stuck around. No one was diagnosed with Tourette Syndrome.

X-posted with the PANDAS board- My son, now 10, started ticcing at age 5. He was recently diagnosed with Tourette Syndrome. We've never connected his tics to a strep infection but his tics started after a long bout with Mycoplasma. Antibiotics really help him when he has a flare up of tics so it's hard to say. He also takes Intuniv and Zoloft and is doing quite well. Last November, his younger sister started burping constantly and we thought it might be a tic but took her to the doctor in case it was acid reflux or something of that nature. To our surprise, she tested positive for Strep throat! She was treated with abx and the burping subsided. The burping is back in full force along with some OCD's (she has to burp 148 times before she falls asleep), she won't step on yellow lines, she's obsessed with time, she picks her fingers around the cuticles until they are bleeding and down to the meat) and just a few days ago, she started an eye tic. She's widening her eyes (how you look when your surprised!) and she does this randomly throughout the day. I called the Pediatrician and she has an appt. next Tuesday to check for strep. What are the odds??? Is it more likely to have 2 kids with Tourette's? How unlikely is it to have 1 child with Tourette's and 1 PANDAS child? Or could she and my son both be PANDAS? I have 3 kids and am pregnant with my fourth. I'm terrified that since 2 out of the 4 have tics and OCD's that this might be genetic! Help!!

X-posted with the Tourette's board- My son, now 10, started ticcing at age 5. He was recently diagnosed with Tourette Syndrome. We've never connected his tics to a strep infection but his tics started after a long bout with Mycoplasma. Antibiotics really help him when he has a flare up of tics so it's hard to say. He also takes Intuniv and Zoloft and is doing quite well. Last November, his younger sister started burping constantly and we thought it might be a tic but took her to the doctor in case it was acid reflux or something of that nature. To our surprise, she tested positive for Strep throat! She was treated with abx and the burping subsided. The burping is back in full force along with some OCD's (she has to burp 148 times before she falls asleep), she won't step on yellow lines, she's obsessed with time, she picks her fingers around the cuticles until they are bleeding and down to the meat) and just a few days ago, she started an eye tic. She's widening her eyes (how you look when your surprised!) and she does this randomly throughout the day. I called the Pediatrician and she has an appt. next Tuesday to check for strep. What are the odds??? Is it more likely to have 2 kids with Tourette's? How unlikely is it to have 1 child with Tourette's and 1 PANDAS child? Or could she and my son both be PANDAS? I have 3 kids and am pregnant with my fourth. I'm terrified that since 2 out of the 4 have tics and OCD's that this might be genetic! Help!!

Video here: http://www.rickey.org/?p=31735

I kinda thought it might be staged...

Fixit, In response to this comment... You mention "kids" so I take it you have more than one child? Does only one of them tic? The reason I ask is because I know for a fact I've read stories online in forums like this one (heck, it might have been this very forum) where their were 2 kids in a family, one had TS, one did not. They grew up to have children of their own. The one without TS had children who tic, and the one with TS had children who do not tic. So as you see, my point is, it can skip around and it doesn't mean that your child who tics will go on to have children who do, too. And besides, there are much worse things that could happen! It's tics, not cancer. I know you love your children, and I know watching them tic is hard. But they can live a very normal live regardless. And it's not bad enough to not have a chance. We only live once.

I missed the actual show but saw the clip on YouTube. Personally, I did not really care for the way NPH spoke to Dave Pittman. To me,he was unnecessarily pointing out the tics and the way he basically seemed surprised that someone with TS would not only be there, but be there doing very well, I might add! Maybe I'm just defensive? Idk... Nonetheless, I'm super proud of Dave and I hope he makes it!!

If you have "hidden" strep somewhere in the body, would the ASO & DNASE titers show it?

Colleen, This was exactly our experience!! Wow! So, did your daughter continue to take the Zith? My son starts his second pack today and I'm confident it will help. I'm just so worried about what happens when he's finished.

The Ped. prescribed a 250 mgs Z-Pack for my sin who weighs 106 pounds. Is that about right? Or is that a low dose?

Unfortunately, today I can see his tics returning so she didn't get to see the improvement that we saw while on the abx. He starts his next pack tomorrow so hopefully we will see the tics subside again. I put a call in to the Ped. this morning back have not heard back yet. I'm trying not to get excited just in case it was a coincidence? I don't know.... so confusing!!

This is the first time he's ever been on Zithromax. He took Amoxicillin back in October for an ear infection and I didn't notice any benefit there. He's been ticcing almost constantly since October (had swine flu and they flared up) I have no idea what the doctor will say or do.

Oh yes, absolutely! I will definitely be starting him on the next pack this Friday, I just don't know what to do from there...

P.S. Also had Sed Rate, CRP and IGG subclasses checked. They were all normal.

I've been away, just busy trying to get back in the swing of things after the holidays. I had a nice long conversation on the telephone with the Pediatrician about doing a trial of abx to see if it would help with ds's tics. She agreed but initially wanted to use Penicillin. I asked her if she felt comfortable trying Augmentin or Zithromax (I learned that here, thanks!) and at first she said no, but to my surprise when we picked up the script from the pharmacy, it was a Z-Pack! She advised me to repeat his bloodwork to check strep titers before we started the abx so we did. The bad new is the strep titers came back negative. The good news is after just 5 days worth of Zithromicin, his tics were basically gone! She wrote the prescription for 250 mg. Zithromax (he's 106 lbs) and instructions were to finish the whole pack (2 pills first day, 1 pill the next 4 days) then STOP for 4 days, refill script and take the next pack. He's currently in his "break" and just today, I can see a few tics sneaking back up. I don't know what to do. I guess I need to call the Ped. again and discuss these results. I know she puts a lot of faith in the blood titers (and he has none) so I assume she won't agree to PANDAS. But what's the deal with the abx helping? Everyone in my family noticed!!! Coincidence? I think not! What now? Advice?

Just had titers re-checked and they were very low....again. But (!) his Pediatrician agreed to try abx and after one week, tics basically diminished! Going to create a new thread now as I need more help!

Yes, I have definitely noticed this!

I was excited until I read that it includes Tourette Syndrome. I was under the impression that this test was specifically for PANDAS but since it's not, I'm not sure how much faith my Pediatrician will put in it. I guess now what I need to know is, are there kids who have all the symptoms but who do not have these antibodies? I mean, is it worth checking to see if my son is in some sort of range?