My 3 year old has just been diagnosed with Tourette's Syndrome....?

Question

My 3 year old son has just been diagnosed with Tourette's Syndrome. He has facial tics (mostly alot of strong blinking of the eyes) and vocal tics that sound like a stutter (repeating the same word up to a dozen times and repeating the last word said to him repeatedly). We have a doctors appointment in a few weeks and I would love to know what to expect, if anyone could help! Especially parents going through the same with their small children!

Answer 1

I have been where you are.

I am wondering who would diagnose TS at such an early age, but no matter. It will become clearer over the next few months or so. Please be aware that well meaning teachers, nurses, friends, other parents, or even a general Pediatrician are not qualified to diagnose TS. Here is what I would recommend:

1) Don't panic. Having Tourettes is not the worst thing in the world. After spending time in a Pediatric Neurology waiting room, I have learned to count my blessings and pray for others.

2) Make an appointment with a Pediatric Neurologist. You may have to get a referral from your child's regular Pediatrician, depending on your insurance or plan. Be persistent and get your child to a Neurologist.

3) While you are waiting for the Neuro appt., video tape your child while he is unaware of the camera (so he won't ham it up!). Do this at a time when the tics are most obvious. This will be helpful in case the tics are not present at the prescribed day and time of the appointment. Also, keep a little journal of the tics. Nothing too laborious, just jot a few times.

4) Bring your video camera (to show the tape), your husband and your notes with you to your next appointment. Information is imperative in the diagnostic process. For some reason, you will be taken more seriously with your husband present. Most pediatricians are used to seeing lots of "hysterical" moms and don't really listen. I had to switch doctors until someone listened and gave me the referral.

5) TS is diagnosed by oral history from you, and general observation in the Doctors office. The video will be most helpful in this. There is no "one" test for Tourettes. You may be asked to have your child undergo an EEG or blood test, but these can only rule out other conditions and that might be helpful.

6) The best thing you can do for him is provide a safe environment where he is able to tic freely without comment from others. A stress free (as much as possible!) and loving home is best! Never ask him to "stop it" (the tics), he can't. However, this is not to be confused with the same, love and discipline you would normally give him.

Best wishes for a good outcome.

My son is 12 and very bright. He scores high on IQ tests, plays chess, builds complex Lego systems, is artistically gifted, makes stop-motion animation movies on his iMac and is just a great kid. He does struggle in some areas in school, but I would not trade him for the world!

Please feel free to email me through this site.

Answer 2

My four year old son has it, expect a lot of waiting for appointments, expect a lot of funny looks from people. We have found it best to try and keep him stress free, recognise his triggers but be firm as well, don't let it rule you life. Be a team, Mum, Dad, & Son. We use a weekly calender that he helps fill in to show him what he is doing, at the end of each night he ticks off the day and talks about tomorrow. We found it is a lot better for him that he know what he is doing, he sleeps a lot better and wakes in a happier mood. And that seems to keep the fits down. Towards the end of the day he is tetchy and more likely to start.
It tends to be the unannounced shopping trip or other children that sets him off. He'll start swearing and hitting out for no obvious reason. We found that shouting at him had no effect at these times so now we will just remove him from the situation and have a "time out" somewhere quiet. Doesn't always work but atleast sometimes it does.
Sorry that I can't be more optimistic, he is a loving child, he loves praise, loves doing things. We don't always do what he wants but keeping fun and busy helps.

Answer 3

if his docter hasn't diagnosed him yet than it probably means he's too young for a diagnosis now. If he's doing all those things he either has tourettes syndrome [an early stage] or he's just a nervous/anxious kid.

Answer 4

The Stuttering Foundation at www.stutteringhelp.org has a brochure on stuttering and Tourette's Syndrome as well as a wealth of information about Tourette's. Check out this page of their web site: http://www.stutteringhelp.org/Default.aspx?tabid=440

Answer 5

There is a Truelife show on MTV that was all about "I have tourette's syndrome." It's all a bit overdramatic but maybe you'd get something out of it if you watched it on youtube or somewhere else.

Answer 6

sorry to hear that.

here are some good sites

http://www.tourettes-disorder.com/introduction.html

http://en.wikipedia.org/wiki/Tourette_syndrome