The intent of my first post was basically to introduce my daughter and I to this site — to give a brief overview of how it all started and were we are at this moment. I, as many of you who have been dealing with this diagnosis for so many years, want to help those of you who have just begun your journey by offering you our experiences.
Even though I am 10-plus years into this journey, I, too, believe there is still much I can learn from everyone who participates on this site because although my daughter is 18 years old now, our journey is not over by a long shot. I embrace every day as an opportunity to learn, to become stonger and to teach others.
I have always told my daughter that I believe she was destined for something great, and I believe that her TS was meant to teach others. She advocates for herself and in doing so is spreading the word.
The following is a response to Kevin, who commented on my initial post. My daughter has many tics to this day. I know that the prognosis in a lot of cases is that the tics will diminish as the teen years pass; however, my daughter’s tics have been constant throughout her life. The following is a list of her tics:
- Vocal tics (sounds like a bark or to some a sneeze, this one is almost every day)
- Kicking her buttocks, which occurs daily. With this tic, she has gotten to the point that she does it without holding on to anything and she manages not to fall down (she kicks both legs back at the same time)
- Thrust arms down (this one is on and off)
- Facial grimaces, at times
- Eye rolling, but not all the time
- A stomach tic, which at times can become very uncomfortable and even painful. With this tic she sucks in her stomach really hard and does some sort of movement that I really can’t explain. She also has another type of torso tic which she appears to be moving all her body around in an odd manner.
The medications she is currently on are:
- Abilify, 15 mg in the morning and 10 mg at night
- Topamax, 25 mg twice a day
- Provigil, to counteract the sedation from the Abilify
- Vyvanse, 30 mg for her ADD.
I did not mention in my original post that she also has ADD but intend to go more in depth about all the other issues we have experienced and continue to experience in my future posts.