Hello, this is my first experience as a blogger. I’m not sure what to expect from this, but I am hoping to gain outsiders’ information on the matter of Tourette Syndrome. My son is 7 years old and recently was diagnosed with this disorder.
He is adopted, and from the very beginning I noticed something just not “right.” We had a closed adoption, so his medical history is limited. He struggled with speech and sensory integration, and we chose to send him to a specialized preschool for early intervention.
As is the case with many other families, he has dealt with a darker side vs. the “typical child.” He deals with high anxiety, OCD traits, anger outbursts and all types of behavioral issues on top of his tics.
We noticed at a very early age — around 3 years old — that he would change a certain behavior almost monthly, which appeared to be triggered by anxiety. He would either sniff his fingers constantly, eye blink repeatedly, make a grunting noise or a sound repeatedly.
Now, unfortunately, he has learned some new-found language too soon for his age from friends up the street. His preferred morning ritual is to verbalize vulgar words to his family members for no reason — very frustrating as a parent. His doctor shared that consequencing him may only increase the behaviors.
Wow … what to do?! We are hoping for some inspiring words of encouragement and tools on how to handle our family situation vs. making excuses for what appears at times to be inappropriate choices.
Well blogging has sure been informative. I appreciate all the feedback. I think this emotional rollercoaster is two fold. I being, all the different medications your child is trying and figuring out what works which most do for us about 3 months then the tics are compromised and just feeling a sense of “out of control” not knowing how things will effect your child short term or long term. Then, just wanting an emotional break from it all. It is hard to enjoy the day to day things when you and your child are trapped in this turmoil. Sometimes, abit of joy is experienced, problem is…we know it is only temporary. The future seems so far off with real possibilities but then again I feel guilty because my son can speak, run, play and do so many things that “handicap” children cant. I keep reminding myself to be thankful but then find myself shortly after stressed out again. I think the biggest fear is the unknown of his future and my families future. With a highly autistic child, one can plan for a future and prepare the family for what is to come. I struggle with the fear of the unknown…the what ifs…all the love in the world cant “fix” my son. I just hope we are sending him to the right medical folks. At the moment, we are trying lithium. This is suppose to assist with mood but not the other areas of anxiety, OCD and ADHD. Anytime we have tried something else his tics fly of the handle. So we wait and we cross our fingers and see. His anxiety is off the charts now. Poor little guy, scared to go outside if it is dark even with mom or dad, scared to walk to bathroom with supervision, scared to walk up or downstairs without another person, suspicious of others when in public places (mumbling off the wall remarks under his breath). We will continue to fight for well being and quality of life. Thank you again for the support.
Hang in there and keep writing! I am trying to do the same.
My daughter is dealing with very similar issues! We did not know that TS (or any of her associated disorders) were in our gene pool. We spent a year trying therapy and diet changes and whatnot, and now for the past 9 months have been working on medicines and finding the right mix for her. She had the speech and sensory integration issues, and still has the anger, ADHD and OCD disorders that are so hard to deal with! Hang in there…we’re all in this together!
Katie, your son sounds a lot like mine, I understand your frustration. I’m not sure that knowing his medical history would be of any help, we know of no one, on either side of our family that has TS, so we were very surprised.
The most troubling symptom my son had was the anger/rage. And the ADD and OCD were making school a nightmare. We decided to try medication when he was 7. It was a lot of trial and error but, when he was 9 we tried a low dose of Risperidone. We were worried about side effects but it was the only thing that helped. The difference was significant.
During summer break and at Christmas I took him off the meds (per doctors orders) then started them again before school began. About a year and a half ago (he was 11) he said he didn’t want to take it anymore. I was skeptical but, I told him we could try it and see how it goes. He’s been doing quite well. I suppose maturity and a better understanding of the root of his anger is what has helped him most.
I’m sure your son’s coprolallia is very difficult for your family, but try to understand that he can’t help it. It sometimes goes along with TS. Just as other tics come and go, hopefully this will go soon. With my son, it seems that stress and anxiety is what triggers and exacerbates his symptoms. So the key for him is learning to deal with it and not be so hard on himself.
I don’t know that any of this is helpful advice, I know that everyone’s personal experience with TS is different, but I wanted to let you know that it will get better.
Wow, I really appreciate your response and supported encouragement. My son also has been trying many options medication wise. Problem has been though, they all seem to eventually increase tic issue even Abilify which is suppose to do opposite. Doctor has not tried Risperdol due to that Abilify is in same family. But, I am not ruling out any options at this point. We will continue to plug away on this journey and we recently made an appointment for my son to go speak with a therapist. We are hoping to gain some further tools on handling his anger. Anger which seems to come out for no apparent reason. So good to hear success in your son’s life and know that others are going through a similiar journey and have found a positive aftermath. Thanks for your reply.