Spinning tic

[wewillbeatthis]

Hello, all

 

I'm relatively new here and I've posted a few other times recently re our 12 yr old son, whose TS and (now OCD) took a sudden spike for the worse in Nov '05 after several years of very mild tics. My wife and would LOVE and appreciate some advice... Sorry for the lengthy post.

 

Background -- In recent weeks, our son has started to do several new, more dramatic tics, including stretching his neck and then proceeding to spin around 2 or 3 times (he also now touches his shins and the floor alot, as well as pretty mild verbal grunts). We're trying to get educated (e.g., Sheila's book) and are in the process of waiting for results from some blood/urine tests (called TRIAD, thru a clinical lab called Metametrix in Atlanta) that were ordered by a homeopathic MD were getting started with... Hopefully, we'll learn from that if his body needs certain things, needs to rid itself of certain things, or if he has allergies we're unaware of, etc. We've also tried to take steps to clean the house better (including HEPA air purifiers) and are trying to ease the whole family into the Feingold Program foods to eliminate artificial flavoring, synthetic preservatives, dyes, etc.

 

Lastly, we learned some about PANDAS and had him tested 10 days ago (even though he didn't have any classic strep symptoms) and learned that sure enough, he DID have strep in his system. He has just completed the 10 treatment of amoxicillen. We're also scheduled our first appt with a pediatric nero named Dr. Erenberg (who we've heard is highly regarded in the study of TS) at the Cleveland Clinic next month.

 

So, here's where we'd love some thoughts/help from others out there -- things were so bad over the holidays that, in late Dec., I addressed his 6th grade baskteball team (and their parents) during a time when our son was NOT there. It was a tough decision, but we wanted to educate them about his condition and ask for there support. They (and their parents) have been great. However, my wife and I feel like we betrayed our son's trust in us in that we addressed his team/friends without him knowing it -- he did NOT want us to do that. We knew he'd be upset, but we concluded that sharing the information with his teammates (which is about 25% of his 6th grade class) was important and would, eventually, take much of the stress off of him in that he would not have to try to "hide" his tics (which is increasingly impossible!). But now, he is REALLY upset at us for doing that and said if we ever went into school to address the entire class he would "never ever speak to us again" or worse. Now we're stuck, b/c I think some of his classmates get on him and say, "Is that a Tourette?" whenever he makes verbal tic or motor tic. last night he cried and cried and said that "everyone hates me." We believe he is being somewhat overdramatic (his school teachers were ALL informed by us of his condition and we speak with them regularly re our son -- they've been great, too), but his pain is very, very real and we're just heartbroken about it... we're trying to help him be "empowered" to explain his tics to his classmates but he just tells us "I don't want to talk about it!"

 

Like many of you, my wife and I do our best to love him alot (and unconditionally) and keep up our and his good spirits, but BOY is it HARD sometimes! Argggg!

 

Thanks for any thoughts....

 

Bless you all,

Wewillbeatthis

[Jeff]

Hi We,

I think I'd just tell your son that you're very sorry for having gone to the team without his approval. Obviously you did it with the best of intentions, but that you went behind his back, it was a mistake, and you're sorry.

You want him to feel "empowered", but yet you did just the opposite of that. Apologizing might give him back some of the sense of control that he feels you took from him by going to the team.

Then you just have to move on. He'll have to learn how to respond to the questions..., but they too will eventually subside.

Despite the bad side-effects of speaking to the team, a good result is that you've educated a lot more people about TS. He may resent it now, but in the long run, it might turn out to be a big help....

Good luck.

On the Feingold note, please feel free to ask me any questions, and visit the Bulletin Board for a wealth of info. I like that you're "easing" into it... otherwise, it can be overwhelming. But it DOES get a lot easier. I think I told you before, that it could take several weeks to see results, and it could even get worse before it gets better....

Jeff

[JAC]

Hi!

Wow! How two stories can be so alike!

 

My son, too, is in 6th grade, and we had a similar situation with his football team. Boys were mimicking and badgering him. I spoke to all parents through e-mail. My son was not happy I did this, but the results were incredible. All that had been a problem was no longer a problem.

 

He, too, did not want to acknowledge his TS in any way, shape, or form and was furious. He was FURIOUS that I told everyone; however, after I quoted several parents' replies, his heart softened and he almost cried after hearing their responses. After that incident, within one or two days of my e-mail, I actually heard him speak to a couple of his team mates about his TS. That was the first time I had ever heard him say it out loud to anybody but me. (His diagnosis was about three years prior.) He couldn't see how anybody could ever understand his "problems".

 

Remember, besides the TS, your son's age plays a big part of how he responds to things. My son with TS is my oldest. Sometimes it's hard to determine if it is preteen drama or the TS (and spectrum of disorders) causing all the emotion.

 

Another similarity...My son twirled for a couple of years on and off. It "was" usually when he was extremely excited about something. He even did it during tackle football. His coaches said it was a good distraction for the other team! The twirling was quite common/daily at least until recently. I haven't seen a twirl since football season ended in mid-November.

 

Recent changes we've made, removing dairy,sugar, scented items in home and used personally seems to have made a gigantic difference with our son's mood and especially vocal tics. The vocal tics went from 10-20 per minute to fewer than 2 per minute.

 

Good luck to you!

[wewillbeatthis]

JAC,

I am VERY glad to hear of your son's improvement! And yes, quite a similarity in those stories!

 

While we deeply regret the loss of a *certain* (not all, thank God!) level of trust when we made the difficult decision to tell his teammates, I think he might admit now that it was a relief for him. It's a tall order indeed to expect a 12-yr old to have the presence and maturity to address his friends and classmates about something like this, especially when the sudden spike in things included add'l anxiety for him, etc.

 

Like you, JAC, we've seen a significant improvement since late Dec (except for a few days) -- since then, we have tried to eliminate artificial and synthetic flavoring/colors/preservatives, etc. (see Feingold.com), we have improved the air quality in our home (and gotten rid of his liberal use of body spray!), and had him treated for strep that we didn't suspect until we learned about PANDAS -- with so many changes, of course, we cannot yet point to one factor being the difference-maker (maybe it was blind luck!).

 

We also did some bloodwork and discovered an allergy to egg and milk (and sensitivity to gluten), so we have strarted the removal of those (to the greatest extent possible -- we are trying to be somewhat realistic!) 2 days ago, along with some supplements our MD recommended.

 

We are keeping our fingers crossed that the few bad days were just blips in the road and that the road is heading in the right direction.

 

Best to all,

Wewillbeatthis

[Chemar]

Just a quick comment re game season and tics..........if any of you notice that tics, OCD etc are UP during a game season (any game played on an outdoor field) in addtition to all the other possible reasons, also consider that the fields are usually HEAVILY PESTICIDED and pesticides are known to be tic triggers for many people!