Dear Vicki,

I need your expertise on this one badly. I'm really concerned for by son, M. right now. To give you some history first, M. was extremely outgoing and coordinated the first 3 years of his life. At age 4 he began to socially withdrawal. At age 5 he had a very sudden onset of neuro behaviors - rapid eye blinking, facial grimacing, and prolonged spinning. He also lost total eye contact at this time. Following sensory integration therapy, he has had extremely rare and mild eye tics from time to time (like once every 3 or 4 months). He has been doing great, even doing well at school, yet the last 2 nights he has been very stressed trying to get to sleep for no apparent reason. His behavior has been very unusual at night and he just looks and sounds out of it. The night before last he was very stressed, saying lots of inappropriate things, and then all of a sudden (after I had calmed him down) he let out this unusual sound (like YOWEEEE!). After making the unusual sound he instantly turned to me and asked, "Was that me?" I said, "Yes, it was." and he said, "It was? I do weird things sometimes." It was as if he was confused and bewildered by the fact that the sound had involuntarily come from him. It broke my heart. I have never seen M. experience anything like this. Is this a vocal tic?

I did some research on the internet today because last night he also made a strange sound while trying to get to sleep.

I'm simply trying to not react to it and focus on calming him and making him comfortable without making an issue of it. The information I read today on Tourette's really didn't address the typical age that symptoms begin. It just said that the onset should be prior to age 18 for a diagnosis. Is there a typical age range for onset? Is there any rhyme or reason as to why this has happened at night?

I'm baffled why this is happening now when he is doing so well. He has really come out socially in the last couple of months (we've worked hard on this and he's very proud of it). He has also learned to say when he's not having a good day and needs help or time alone. His teacher is very excited that he goes and tells her when he's having a hard time and needs to go to the resource room for a little while. In the past he just sat there stressed out until she could see signs of his stress. I thought tics were generally triggered by stress.

I would really appreciate your input as always!

C.

Dear C.

It isn't unusual for tics to start suddenly. And if you go back and check your records, you may find that he had been sick with a virus or strep infection a few days or weeks before the sudden onset. Current thinking is that, in some cases, an infection may trigger an auto-immune reaction affecting the basal ganglia area of the brain.

Losing total eye contact isn't a typical Tourette symptom and while I'm all in favor of sensory integration therapy for those with sensory integration problems... it generally doesn't do much for tics.

It is the nature of tics to wax and wane - that is, you have spells when tics are bad and spells when they go away completely or become very minor. This means that most anything you do when the tics are at their worst will look like 'the cure' when the tics go away or calm down, as they would do naturally. The real test of whether something 'works' or not is what happens during the next upward cycle. This tendency has confused doctors since the 1800's...in fact, for many years the tics were thought to be psychological in nature, because people would seek out a doctor when tics were bad, then get better and go home again. The 'talking docs' thought they had 'cured' them...several even published in medical journals about their cures. What REALLY happened is that the folks had gone into waning cycles; when the tics came back up after a time, as they would naturally, the patients didn't bother to travel again many miles to see the 'talking doc' again. (None of their published papers included any followup with their patients!) This has only been understood for about the last 20 - 25 years.

The best thing you can do for your child when he is expressing tics is (1) take a DEEP breath and (2) try to calm down. I KNOW that is hard to do...but it is the best thing for Matthew, and the best thing for you. Many kids - not just those with Tourette - have an occasional tic in the elementary age years. (Somewhere I read about 18% do!) Some are mild, some are VERY noticeable. Most tics go away relatively quickly...that is why a diagnosis of Tourette requires tics to continue (on and off) over a period of at least one year AND have both vocal and motor tics. The vast majority don't meet that criteria. Even for those who do, time is often the best 'cure'. Age 5 - 9 is most typical age range for onset of TS while the worst ticcing seems to be between the ages of 7 - 13; after that, most find that their tics calm down considerably. More than half the adults diagnosed with Tourette aren't even on medication - their tics have become very mild or they have learned to live comfortably with them.

Our son, R. is now age 15 and maybe has 4 or 5 tics per WEEK - versus 40 or more per day when he was younger. This is a common pattern - by the mid-teens, the tics decrease. My 12 yo son has had tics as a result of a mild head injury. For a time about age 9 they were very severe...but he hasn't had a single tic in over a year now. So, no matter how bad a tic may seem, it will NOT last forever. Only a handful of people have severe tics into adulthood; the odds are much higher that your son will follow the usual route of less ticcing by the teens.

Now, his ticcing may well get worse BEFORE he gets to the teens...but there is a light at the end of the tunnel!!

I wouldn't know of a reason that it happened at night, but think of a cough. You can 'hold it in' temporarily while listening to a concert, but you eventually have to let it out. You know within your body that the cough is coming, but you have some (minimal) control over the timing. Tics work in a similar fashion. Kids are less apt than adults to know when the tics are coming, but they still can 'involuntarily' hold back tics for some period of time. Very often kids hold the tics back in school, and then tic like crazy in the privacy of their own homes in the fternoon/evening.

Regarding your question about the relationship between stress and tics…Tics are neurological in nature. Researchers know they wax and wane, but can't really explain why. Many folks point out possible connection with illness - that is, tic levels sometimes increase or decrease noticeably when the person is ill. The very best thing you can do for tics is...leave them alone. Think of it like hiccups. If your son suddenly got hiccups, you would just think, "Poor guy, he has hiccups" - and go on about your business. You wouldn't dote over him, you wouldn't worry about what had happened to his stability, you wouldn't say 'it broke my heart'. He just had hiccups. They would go away and he would get back to whatever he was doing. Well, tics are sort of the same way. There is some connection to stress...and it is assured that, the more you pay attention to the tics, the more YOU show signs of stress over his ticcing, the more likely he is to tic. The more you treat the tics like hiccups - something that is there, you are sympathetic, but it will pass...the less likely he is to tic.

Docs who specialize in Tourette generally advise not medicating for tics UNLESS (1) the tics are physically painful or perhaps damaging to the body - most are not, but some can be; or (2) the tics are interfering with his ability to learn and develop in a normal way. For example, if he has an eye tic that makes it hard to learn to read, he should try medication, as learning to read is very important for a child. But if the tics are merely 'odd' - not what people are accustomed to seeing, but not really bothering the patient, then he needs to learn to live with the tics. If folks notice, he can learn to say, "Oh, that is just a tic" and go on. Most people are merely curious; they aren't familiar with tics. Once you explain, it is okay. This is especially important for playmates and classmates. Kids can be very understanding...once they know that the person is not doing it on purpose and that it isn't contagious.

Vicki