Jordansmom

Well, it's painfully obvious to me that Jordan's tics are not PANDAS related. We were desparately hoping they were, as antibiotics are an "easy" treatment, but this round of antiobiotics has not eliminated his tics. In fact, they have worsened. We met with Jordan's 2nd grade teacher this morning, and it was very painful. She said his tics are virtually non-stop in school, and while they are not (yet) disruptive to his classmates, they are very disruptive to him, and are causing him great difficulty in staying focused and completing his work. She also said she had heard vocal tics, which was shocking to me as we have never heard anything at home, other than snorting. I think it's time we need to face the facts that these are not just going to go away without help, and if we continue to let him go one like this, his academics (and ultimately social life) are going to suffer miserably. Our neurologist did say that if the antibiotics didn't work, we could try a drug like clonidine, which should help with the tics, and as a side benefit, treat some of the ADHD-type behaviors we have noticed as well. Has anyone tried this drug for their child? Did it work? What were the side effects? Thanks, Julie

Thanks for your response! I never really thought about a connection with lights. I'll have to try some experimenting to see if it makes a difference. Excellent point ... thank you! Oh, and I just saw your response to me above (somehow I missed it). I did forget to mention that Jordan has been on prophylactic antiobiotics. He's been taking zithromax - 1/2 pill 2 times per week. I want to talk to my neurologist about increasing that, though, since he's had a recurrence on that dosage. Thanks! Julie

Patty, I don't really know what triggers Jordan's tics - I wish I did. So far, the only thing we noticed is that stress seems to make things worse. It was ironic - he was tic-free the entire summer (while he was just in camp playing everyday), but then within 5 days of starting school again, the tics came back. When he is having tics, we do notice them more when he is sitting and concentrating, like while playing on the computer, doing homework, or watching TV. But, sometimes, he'll just have tic after tic when doing something simple like eating dinner. The tics themselves has evolved as well. We never really know what to expect. The very first tic I ever remember was him sniffing. I used to tell my husband it was a problem, but he thought it was just a habit. Then the sniffing became snorting, and then he began jerking his head back and forth and side to side. It was then we really knew there was a problem. He's had other tics as well ... smelling his fingers, pursing his lips, srunching up his nose, clenching his hands in fists, etc. I think it's very common for the tics to evolve into different tics. At this moment, we are practically tic free. Again, I don't know if the tics just went away on their own, or if it was the Zithromax that "cured" them again. He is still have mild tics, but I doubt they are noticeable to anyone but my husband and me (because we are CONSTANTLY watching him). But, I do lie awake at night just worrying about what the next day will bring. Everytime he does ANYTHING (makes a funny movement or sound, or burps or hiccups) my heart drops because I do not know if it is a tic or not. I just can't stand watching him go through this ... I know you know how I feel ... it's heartbreaking! Hugs! Julie

Patty, First, let me say that I am far from an expert on this topic. In fact, I could have written your post. My life has been turned upside down when my son went through the same exact thing in April. It is very frightening, but it does help to know that you are not alone. I agree with the poster that suggested the blood testing for strep titers. However, regardless of the outcome, I would see if your Dr. would prescribe a course of antibiotics anyway. Jordan has never tested positive for strep or even elevated strep titers. However, his neurologist, who has done a lot of the pioneering research on PANDAS, feels that there are many other strep-like infections that can have a similar impact. So, as an experiment, when this began for Jordan in April, he went on 7-days of Zithromax. Within 2 weeks, all symptoms completely disappeared. He had another onset in July, and again, after a course of Zithromax, they were gone. We are now on our 3rd onset. We have just completed the antibiotics, and are waiting to see if they will work again. I would double check with your Dr. to make sure he ran the appropriate blood tests, and discuss a course of antibiotics. It may not work, but it's a low-risk option that could have a big reward. I'm really not sure if this is the answer, but it has worked for us 2 out of 2 times. Like I said, it's worth a try. Good luck! Julie

Thanks for the info. I did forget to mention above that we have been on Zithromax twice per week since the second "outbreak" in July. That's another reason why this is so confusing ... Julie

Hi! THis is my firs post here, although I've been reading for months. About 6 months ago, my 7-yr old son had a sudden onset of pretty significant motors tics (thrashing his head side to side, shrugging shoulders, sniffing/snorting, etc). After seeing two pediatricians, and one neurologist who was completely clueless, I finally found (through a ton of research) a ped. neurologist who specialized in tic disorders, Tourettes, and Pandas. He immediately thought that Jordan had PANDAS, and prescribed Zithromax for a week, and ran a complete battery of blood tests (all the titers, etc.) After a week on Zithromax, the tics essentially disappeared, although all his blood tests came out negative (even the strep titers were all within normal range). The Dr. thought that the tics could still have been caused by another type of infection (like a staph infection) that could not be detected in the blood, but responded to Zithromax. Fast forward to July ... same thing. Sudden recurrence of tics, negative blood tests, but tics responded to Zithromax within about 10 days. He was tic-free all summer, but they recurred again on Friday. Dr. again put us on Zithromax, although it is too early to see if it is working. Of course, I'd like to believe it is a type of PANDAS, and that the tics will again respond to Zithromax. However, I'm wondering if anyone here has been through something similar. Could it really be PANDAS after all his blood tests come out completely normal? It would be nice if the antibiotics were a "quick fix," but I wonder if these are just "transient tics" that come and go. I'm so disturbed by this whole thing ... my heart is just breaking for him ... Thanks for any input, Julie

Hi! I live in Northern NJ, and have a GREAT Dr. currently treating my son for (suspected) PANDAS. He's currenty in Newark at UMDMJ, and has pioneered a lot of the research on PANDAS. If you e-mail me, I will give you his name and number (feel funny posting someone else's information on the internet!) Julie