This is part 1 of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son.
Hello, I am the mother of a 14-year-old son, Spencer, who has Tourette Syndrome. Unfortunately, we had to take a bumpy road before this diagnosis. I could write a book on our journey so far, and I still don‘t have it figured out.
It has never been easy, including the beginning that started with the worst case of Hyperemesis, Pitocin, 24 hours of labor and hemorrhaging to get him into the world. Nursing was a challenge, he didn’t sleep much, had some ear infections and was sensitive to loud sounds.
He was otherwise very healthy and always in the 95 percent on the height/weight charts. He walked at 15 months and was running within the end of that month. He had an advanced vocabulary and figured out how to open up the most advanced cabinet locks by his first birthday.
He had an atypical febrile seizure at 14 months old that was severe enough to have him admitted, but thankfully all the tests came back positive. As a toddler, he was very impulsive when it came to playing with other children and it was not long until we were outcasts in play groups. It is then that I started to feel isolated. Continue reading →
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: Continue reading →