Tourettes or Pandas

[ab1988]

Hi Everyone,

First I want to say the wealth of information here is amazing. I have been lurking for a few months now and wanted to post to hopefully get some insight.

My DS (Now 9) first had blinking tics at around 5 years old. His pediatrician coincidentally has Tourette's and has done research on pandas and suggested that because of the sudden onset we should try a course of antibiotic's which worked (He was strep positive). Then again at 7 years old the Blinking came back with some sniffing. We again gave him antibiotics and the tics went away (Strep Positive). 

Now again almost overnight facial tics appeared around 3 and a half months ago followed by sniffing and throat clearing. We went to his pediatrician and he gave another dose of antibiotics to treat possible strep although test came back negative. This time they didn't work and we suggested a blood test. He came back positive for strep and mycoplasma antibodies. We gave another course of antibiotics to treat the mycoplasma but Tics did not subside.

Now our pediatrician is unwilling to try another blood test or any additional antibiotics and basically tells us to live with it. It seems like he doesn't want to have the conversation because its something that's difficult for him to discuss.  My wife took another child for a checkup today and when she brought up the topic to discuss he immediately cut her off and said he can't talk about this as it is brings back memories.

We are at somewhat of a crossroads right now and unsure how to move forward. He is a very happy intelligent and outgoing child with a strong core group of friends. It also seems as if he does not notice his tics although his doctor begs to differ.  As parents we are very conflicted because it hurts us to see our child tic, but at the same time we do not want to bring attention to it and take him to different doctors trying to find the magic pill to fix this. We have been giving him magnesium gummies for 2 months (200 mg a day). Its difficult to say whether or not they work. (Although the frequency of facial tics has decreased to only at night when he is wearing his glasses. The phonic tics are still there).

Also, his uncle had a short history of a shoulder shrugging tic when he was younger which went away after a few months.

I have seen so much good information and positivity here I guess I am just looking for some input for people who have been here before.

Any insight would be appreciated.

 

 

[Sheila]

Hi ab1988.Welcome to the forums. It's encouraging to read in your post that the facial tics have diminished, though it's hard for you to know why. 

You said you've read a lot on the forums. I'm not sure if you have seen the website articles also. Have you tried any other interventions yet?  It an take a multi-faceted approach to subdue tics. Here's an example of what one parent did, It represents a number of different concept that parents have used. Not everyone does all of them, of course.

https://latitudes.org/dealing-with-tourettes-or-tics-i-wrote-this-just-for-you/

It's interesting that the facial tics are coming on in the evening when he's wearing glasses. Why is that the time he wears glasses? What is he doing at the time?

Just for you to be aware -- and there are certainly no simple answers for everyone -- exposure to toxic chemicals, from pesticides to formaldehyde to scented products--are known to cause vocal tics in some individuals. Allergies can do the same, including mold.

There are approaches that may be helpful without your boy feeling like you are dragging him to different doctors when he is not very aware of his tics. That said, it doesn't sound like he's been to a lot of docs so far--but it does seem you may want to change your pediatrician!  

Please let us know what you think of the linked article above and whether you see any aspect of it that resonates with your situation, okay? 

Also, you might want to post in the PANDAS/PANS forum for feedback.