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Concerned mom
Hi everyone
I am Noah's mom. Noah is 10 and has been having having motor and vocal tics for over a year. He has many neck and head tics and also repeats his own and other's words. Looking back it has probably been longer. When they started we took Noah to the pediatrician who said, "It could be.....probably is Tourette Syndrome." He offered us the second opinion of a neurologist and we were on our way. Noah's tics "wax and wane" as they say with really good days and really not so good days. On bad days he can have 120+ neck tics an hour (I counted). So.... six months go by and we decide to take our pediatrician up on that referral to a neurologist. Our appointment with the neurologist was discouraging for me. He spent most of the appointment trying to convince me that we didn't want to put him on any meds for tics(which I agree with at this point)and I got the impression that he felt we were wasting his time. Of course, Noah sat their motionless and silent. He ordered some lab tests I think it was thyroid levels and copper metabolism but said he expected these to be normal "or he would have been sicker by now." We haven't done these yet. He also said that he wasn't convinced that Noah has TS because he hasn't had the verbal tics for over a year. Looking back, we realize that he has had the verbal tics for over a year but we did not recognize them at first. We wondered "why does he repeat things that he says?" His only advice was to get the HBO documentary "I Have Tourettes but Tourettes Doesn't Have Me." We feel strongly that Noah does have TS and I think it would be easier for him to understand this if he had a name for it. As the neurologist left the room he said, "I can not help you" For the most part Noah deals with tics pretty well, he gets good grades and is well behaved at school. However, lately he has been having mood swings and anger problems. Is this from TS? is there more that we should be doing for him? is this from trying to "hold it together" all day? Or is the anger/mood swings all part of growing up? I am trying not to attribute everything he does to TS. So...... I am wondering if there is more that I should be doing for him? We want him to be happy and help him deal with all of this. It is hard to know how to help him because he is quiet and doesn't like to talk about his tics a whole lot. Also what do you do for the pain caused from having 120+ tics an hour? Thanks to everyone for listening, I would appreciate hearing anything that you have learned through all of this.
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