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Son, mom discover TS after hearing about Tourette on Oprah

When my son was first born, I noticed he startled a lot, cried a LOT, didn’t sleep well and didn’t latch on properly for nursing. He cried almost constantly. We thought he had colic, but nothing helped. If we held him upright, he would bump his face against our chest like he was rooting, but he wasn’t hungry.

I tried everything I could think of to try to make him feel better and sleep…nothing helped. He had to be held constantly, otherwise he (and I) wouldn’t get any sleep. He would only sleep for an hour or two at a time. I tried switching to formula — didn’t help. I tried soy formula — didn’t help.

At seven weeks, I tried lactose-free formula. Finally some relief!!! No more constant crying! He still wasn’t sleeping much; though, he would take very short naps if I was holding him or if we were in the car and moving. If the car stopped, he woke up and cried.

Between ages 1 and 2 he would get very angry about having his diaper changed, he would kick and hit. By the time he was 3 he was getting angry about a lot of things. Most of his anger was directed at his father. I knew this was more than just the “terrible twos.”

I started doing some research, and I thought maybe he had sensory issues or Asperger’s, but he didn’t have enough of the symptoms. I noticed he was blinking his eyes a lot. He had allergies, so I attributed it to that. Then he started sniffing, but he didn’t have a runny nose. Next was a shoulder shrug and spreading his fingers.

When I asked him why he kept doing these things, he said he didn’t know. The rage was increasing, and every day was a struggle to get him dressed and out the door. Socks and shoes were a MAJOR issue. We could never get them to feel right for him.

By the time he was 4, he was becoming very picky about what he would eat. If it didn’t look right or smell right to him he wouldn’t eat it. We decided to try a therapist for some help with his anger problem. We went to three different ones, and none of their ideas helped. He could care less about stars on charts or rewards.

I started researching again and came upon Tourette’s Syndrome. I didn’t know much about it, no one on either side of the family has it.  I was fortunate enough to have a local support group and attended a few meetings. The more I learned, the more I was convinced that he had TS.

About that time was when the kids from “I Have Tourette’s, But Tourette’s Doesn’t Have Me” were going to be on Oprah. While I was watching, my son came into the room and began watching. He said to me “I think that’s what I have.” I replied, “I think so, too.” I began documenting his tics and a year later, at age 6, he was diagnosed.

He started having trouble staying focused and on task at school. He wasn’t able to finish his work and had to bring it home to complete it. The homework turned into a several-hour ordeal with lots of tears. He is very smart, and he knew the answers, but ADD and OCD were making it extremely difficult. He was overwhelmed by the amount of work he had and did a lot of erasing and writing over because the letters or numbers didn’t look right to him.

He became depressed and withdrawn. His tics have never been severe, but he had some that were painful. Some were sensory tics that he couldn’t “get out.” I think they were triggered by stress. His teacher at the time was not understanding or knowledgeable about TS.

It was very reluctantly that I decided to try medication. Finally, after trying six different drugs, we found one that helped. He was doing better in school and slept through the night for the first time at age 9. That means that I got to sleep through the night for the first time in 9 years as well!

He is 12 now and has been off all meds since May. He said he felt that it didn’t help much, anyway. He seems to be handling junior high well so far…his grades are good, but he struggles socially, and he doesn’t have any close friends.

I’m thrilled that he’s doing so well, but I’m kind of walking on egg shells. I thought at this age his symptoms would get worse. I pray that doesn’t happen.

0 Comments

  1. omg. I am just writing my post for this blog-I self diagnosed at age 8 after seeing kids with TS on Oprah! This was about 23 years ago. We really ought to write to her! Just wanted to share my Oprah connection.

  2. Omg you described my son exactly … I would love to talk more please email me. Thanks!

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