My son is 4 years old and has just been diagnosed with Tourette Syndrome. I understand that the onset of TS is around 7 years old... What would cause my son's to show up at such a young age? His tics started around his 3rd birthday...
Right now his TS is SEVERE (6 motor tics, 5 vocal tics) and he has the co-morbid conditions of OCD and ADHD. Can I expect the TS to become worse over time?
He is on Tenex, .5 MG at night, .75 MG in the morning... he is 45 inches and 40 pounds. His tics are still very bad (especially the snorting and grunting and mouth twitching) on this dose, but, his hyperactivity has diminished significantly. What is the typical dosage for a tall 4 year old? Is there another medication that may work better?
Thank you for your time. I know this is a long question.
The usual time span when most children present with TS is between 5 and 10. We have several patients who started out with their TS before. Our first line medication is not Tenex, but either Orap or Haldol. We have not found tenex that helpful in our patient population and it is a third line medication at the Cleveland Clinic. It is very common to have OCD and ADHD with TS. We use Zoloft for the OCD and it all depends for ADHD. We think that Ritalin works fine and we do not see increased Tics with this medication.
Some children have Tics that are very hard to control and in these children it is a challenge.
As a mom with a possible Tourette child I was curious to know if his symptoms started suddenly, or what was the first thing you noticed. Does he have tics every day, both motor and vocal? Has he had a cessation period where it was just motor and no vocal? Does his head ever just shake up and down and then he pats his chest with hands? Does he have them as soon as he wakes up or just in certain situations?
Sean gradually added more and more tics over a short peroid of time (about 3-4 months) until he was having a lot of trouble with the tics. Sometimes he has several tics a day all day long... these I call his severe days... and he will display around 6 motor tics and 5 vocal tics throughout the day. Sometimes combining a motor with a vocal tic. Example... head jerk with a "AR" noise. Other days he will only have a few mild tics... grunting and snorting with some mouth stretching and nose wiggling. His tics are worse as the day goes on typically, but, sometimes will start the grunting and snorting as soon as he wakes up... usually on the severe days. When he is overtired, in a stressful situation (loud, busy places), or ill (like when he had strep throat), his tics will be terribly pronounced and frequent (up to 10 times a minute). Typically, the hyperactivity and OCD behaviors will also increase when the tics do. He has definite cycles to the tic severity and... although he hasn't been completely tic free... on the best days he may only have a couple of motor tics or a couple of vocal tics. Unfortunately, the best days do not last very long. Right now it seems that he has more severe days than mild days...
I was told that Sean's TS is quite severe. I am curious what I can expect about the severity over time. I am hoping that it will not worsen.
Just as a matter of reference you might, if you haven't already, want to contact the Tourette Syndrome Association. Their phone number is 718-224-2999. Their Web site has some good information and after I contacted them they sent me some literature in the mail, including a physician and chapter referral list. It doesn't answer all your questions, but maybe it will be of some benefit to you. I think the physicians in this forum have been the MOST helpful to me, so you're posting in a good place.
I was also wondering if they did an EEG or a MRI on Sean, not as a diagnostic tool for Tourettes, but just to rule out other possibilities.
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