Re: ** What could my 11-year-old have??? Tourette's?????.....**

Posted By CCF Neuro[P] MD, RPS on March 23, 1999 at 18:13:23:

In Reply to: ** What could my 11-year-old have??? Tourette's?????.....** posted by Annie B. on March 23, 1999 at 14:43:39:






: I have an 11-year-old boy, who has been experience (or should I say, performing?) many different "tics", and they started in a mild sense of the form about 2 years ago.  At first he would just blink his eyes.  This would go off and on every so often, not every day, but always when he was upset.  Then about a year ago he started making a cough/bark sound, along with the blinking eyes.  Then about 8 months ago, after a family friend died, and I started to have a lot of health problems myself, he started making "sounds", something like "tch, tch, tch," usually one of those sounds after being repeated 3-5 times would be quite a bit louder.  It really started annoying my other son, and he figured my 11-year-old was doing it just to bother him, but although my husband and I have tried to help him stop these tics, he keeps doing them.  One day, I almost cried because he was in his room all by himself, and he was making the sounds, blinking his eyes, and I felt guilty for thinking he was just trying to pester his little brother.  Then about 4 months ago, he started opening his jaw really wide and puts his hands in front of mouth each time he does this.  I asked him why he does it, and he said that if he doesn't do, and tries to hold it back, he feels like he will "explode or something else".  I held his hands while talking to him, and asked him if I could help him stop, by reminding him each time I saw him do it while I sat next to him, and so I did.  He finally pulled his hands away, and did it about 3 times in a row.  He said, "Ahhh, that feels so much better."  What is going on with my son?  These tics don't happen every day, although they do happen very often anymore, and are more pronounced when he is excited, happy, upset, any extreme of emotion.  One day when we were going to church, and he was VERY excited and happy about getting to do something there, he made so many sounds, snorts, coughs, or whatever those sounds are, that my husband yelled at him to stop.  You could tell he was trying really hard to suppress them, but he was still doing it quieter, and then finally, he started to settle down.  My heart is breaking for my boy.  I love him so very much, and I feel confused.  Is this "normal" behavior, I do know that a lot of pre-adolescents sometimes get "tics" when nervous, etc., but I have read some of your postings on Tourettes, and had good family friend who had it years ago (he is 23 years old now and is mostly "tic" free, just occasional blinking eyes) and I remembered how tough it was to cope for his parents, and him.  I do homeschool my boys, so at least he isn't being made fun of at school, but he has a lot of social interaction with church, kids groups, outings, etc., and even some adults are starting to make comments to him.  It hurts him, but I don't know what to do.  One last thing, I realize not all doctors are qualified to handle this condition, if this is what my son has, and I would need help in locating a doctor who could help us, or evaluate my son.  He has trouble concentrating on his schoolwork sometimes because on days when his tics are bad, he is constantly distracted.  At least it's just one on one with me and him, and I can work at his pace, but this is making life hard for all of us.  I realize this forum is not to diagnose, but I truly do not know what to do, or where to turn.  Thank you so very much for your time.  I cannot tell you how thankful I am for your forum.




Dear Annie B:
I am sorry to hear about your son.  Yes, your son has Tourette Syndrome.  The diagnosis/definition of Tourette Syndrome is that the child has both motor tics and vocal tics that have been present for the previous 1 year.  The frequency of the tics is know to varying from very frequent to absent, but they will continue again after an absence.  During time of stress, the frequency of tics will increase.  Your son has these tics not because he wants to but due to some abnormality in his brain that we have yet to discover.  The tics will not hurt him physically, but due to the emotional aspect of having Tourette syndrome we often give medications to reduce the tic frequency.  You should know that there are two diseases that are associated with Tourette Syndrome, attention deficit hyperactivity and obsessive-compulsive disorders.  These latter two problems can also be treated with medications.  There is a national Tourette Syndrome Association that you can get information from, 42-40 Bell Boulevard, Bayside, NY 11361-2861.  The phone number is 1-800-237-0717.
We like to treat our Tourette Syndrome with a learning assessment, tic medications, and if the other co-morbid disorders exist, then the medical treatment with them.  
The important thing is that you know that your son cannot control the tics.  He may be able to suppress the tics for a limited time but they will come back.  There is a spectrum of patients who do fully resolve from their tics and some patients who do not.  We are not able to tell which patient will fall into which category.  The medication will help control the tics but not alter the course of the disease duration.  We at the Cleveland Clinic are one of the national centers for Tourette Syndrome.  If you are in the area, we would be happy to see your son.  Let us know what we can do to help.
Sincerely,
CCF Neuro[P] MD    




Thank you so much for your help.  I will call the number you gave me.  My husband had a thought about possibly altering our son's diet to help with his tourette's.  He thought that since B vitamins and protein help your nervous system, it might make sense to add some protein, such as one protein shake a day that contains B vitamins, and maybe giving his nervous system a boost.  Maybe we just don't understand correctly about the correlation between getting enough B vitamins and the body's nervous system, and where Tourette's plays a role in any of this, but if there is anything that we can do for our son, we want to at least try.  He seems to crave protein foods quite often, cheeses, meats, etc., but I don't always give it to him, it used to seem so odd to me to want to eat leftover pork chops and salad for breakfast, for example.  but that is what he would ask for sometimes.  Could his body perhaps be craving these sort of foods because of this brain abnormality that causes Tourette's?  I hope my question isn't too strange, and if I'm off base, please let me know.  Again, thank you for answering so quickly.  Although I can't really say it eases my mind to know, I suppose a part of me is glad to have a direction to go in so we can get him the help he needs.  Thank you very much for your time.




Dear Annie B:
Diet has not been shown to help tourette syndrome.  Vitamin therapy does not seem to help the tics.  Of course a good diet is benefical for overall health and this would be good for keeping the stress under control.  It really sounds like he will need medication.  I would see a good pediatric neurologist.  Good luck.
Sincerely,
CCF Neuro[P] MD