starlygirl

Just wondering if anyone else has/had a child with severe vocal tics who attends school. What was your experience with school/teachers/classmates. My son is literally ticcing every second or two all day long with various loud throat-clearing & hacking sounds. It never lets up. It's so awful, I don't think I can send him to school like this. He's supposed to start Kindergarten in August.

My Dad is an engineer. My husband works in the civil engineering field.

A virus can cause PANS which is different from PANDAS. PANS can be triggered by any microbe whereas PANDAS is from strep. You said your child had a virus and since then has had that cough tic. That could be a manifestation of PANS Gotcha..I will definately ask our dr about that - as it currently stands other than the cough/throat clear there is nothing different about his behaviour other than feeling self conscious about making this noise and not being able to chat about sports, school and the usual things we talk about. Def. look into PANS. My son presented w/ this same cough tic (no other symptoms) after what was most likely a viral infection. He has PANDAS/PANS.

Lilly - Ask a doctor to do a nasal culture (they'll swab the sinuses similar to how they swab the throat for a throat culture). My son had a fungal sinus infection for months & his old doctor kept prescribing different allergy medications. We switched to a new ped who took a culture and low and behold, it was a fungal infection all along. He was prescribed diflucan.

SF Mom - What test would you recommend to test for heavy metals?

This happened to my son once. He was scratching furiously all over for a few minutes. A couple other times, he has suddenly felt like ants were biting him. I didn't see these as tics, but did see them as something going haywire in his nervous system. It's only happened a few isolated times & very briefly, so I haven't asked any doctors about it.

I have considered it, but my son can't swallow capsules and I understand the NAC powder tastes really bad. I'm keeping it in mind for the future for sure. Will be interesting to see the study results.

Here is the website for the lab: http://www.moleculera.com/ It says the lab should be open for business around the end of February.

Thanks, Chemar. Our pediatrician does suspect PANDAS, so we are currently giving a longer course of Augmentin. We are also doing a gluten-free/dairy-free/soy-free diet as well as no artificial colors/flavors/etc. And we are addressing yeast overgrowth, methylation issues and giving several supplements/vitamins/minerals based on testing that was done by this pediatrician who uses an integrative approach. We've been doing all of the above for 2 months and he has been *almost* completely tic free for the last month, so I'm really hoping to maintain the good results. Just nervous that the improvement might have nothing to do with any of the stuff we're doing & may simply be attributed to waxing/waning.

Can anyone describe what waxing & waning looks like in yourself/your child? I'm trying to understand what level of fluctuation is normal or if there is no "normal". For instance, does waxing/waning mean that symptoms are always there, but sometimes milder than others? Or does it mean symptoms can disappear completely for periods of time (weeks/months) and then become very severe for a while, only to disappear again. Just curious. My son fits the latter description - over the last year, he has fluctuated wildly between severe, almost continuous tics and little to no tics at all - each stage lasted for approximately 3 months.

Hi - I wouldn't be too scared of the amox. I'd think if it were to have a negative impact on tics, you'd notice pretty quickly. For a positive impact (in the event of PANDAS), it could help right away or it could take longer. My child just turned 5 and has been taking Augmentin (which is Amox + another antibiotic) for 2 months now for suspected PANDAS. It wasn't until the 5th week that we noticed a huge improvement, and I'm still not sure if the improvement can be attributed to the Augmentin or to natural waxing/waning or to other things we are also doing (vitamins, supplements, diet, etc.). Anyway, good luck & keep us posted on how everything goes.

I've had the same frustration. I just assumed it's because Tourette's must be so rare that there are hardly any people reading these forums. Which then makes me feel even more isolated than I already do in real life. I can't believe there's not a more active forum online to discuss these issues unless there really are only a tiny handful of people in the world dealing with this. I notice the Pandas board is more active, so I read that as well since my son seems to have some kind of unlucky combination of underlying Tourette's as well as Pandas symptoms (tics greatly exacerbated after illnesses). I will try to post more often. Maybe people are just shy about posting in the first place since hardly anyone does.

Thanks for the help! I discontinued everything except Augmentin today. The rashes look better. However, he ran a fever today, was lethargic & a little congested, so I think he's coming down with a cold virus now. Hopefully fever, etc. is not a reaction to the Augmentin. Will continue to watch closely tomorrow & have Benadryl on hand if needed. Will eventually add the other things back one at a time very gradually & probably start at lower doses & work up to full dose. LLM, thanks for the info about the folate. Looks like the Kirkman multi we're using has 400mcg folic acid in it. The B6 & B12 lozenge also has 800mcg folate as "calcium folinate". Should that form be avoided as well? Dr. had wanted us to start out with 1g of the 5-MTHF, but after reading your story, I think we'll start at a fraction of that & slowly work up. My son has 2 copies of the C677T mutation.

We finally found a local pediatrician to treat PANDAS. She takes an integrative approach & has suggested many vitamins/supplements in addition to antibiotic based on various tests she ran. We started everything at once 2 weeks ago, which was clearly a bad idea, because DS keeps getting rashes. They are itchy/burny feeling red bumps that have cropped up first on his back, then legs, now face. At first I was thinking it was from detox/dieoff, but now I'm worrying he's allergic or having a bad reaction to something. I think I'll have to discontinue everything & reintroduce one at a time. Any ideas on which of these items is more likely to be causing rashes?: Augmentin for PANDAS Diflucan for yeast & fungal infection in sinuses Kirkman chewable multivitamin 5-MTHF for MTHFR mutation Vitamin B6 & B12 lozenge Vitamin D Fish Oil Probiotic I'm just really hoping he doesn't have an allergy to Augmentin. He's taken it before, but I suppose he could suddenly be allergic?

We don't actually have a PANDAS specialist. This is an open-minded local pediatrician who apparently sees a fair amount of PANDAS cases in her practice.