California family a success story despite family history of tics

Posted on March 8, 2012 by CherylH

My name is Cheryl, and I live in the Central Valley of California. I am the mother of one son with severe Tourette Syndrome and another with moderate to severe OCD. They are both now in their late 20s but were diagnosed in fourth and sixth grades, respectively.

My husband and I and our sons have survived the journey with many bumps and bruises along the way…but we did survive and even thrive, even though it wasn’t the journey we expected.

All in all, I believe we raised both of our sons to talk intelligently about their conditions to others (especially authority figures who were always questioning them), have compassion for others with differences (both will take the side of an ‘underdog’ in a heartbeat), and know that home is always a safe place for their tics and routines (despite about a year of all of us wearing ear plugs because of a screaming tic phase. :)

Our youngest with TS still lives with us, but he is working part-time and has a girlfriend. I must say that during junior high and high school, we never thought things would improve for him! There are still struggles with several long-time tics (including screaming and coprolalia) and he has what I call “add-ons,” such as mood fluctuation, irritability and depression. But he is doing remarkably well for the places he’s been! Continue reading →

A family history: Mother not discouraged by Movement Disorder

Posted on February 13, 2012 by EllenT

Surprise! I feel as if I have been hit by a ton of bricks. With my family history, I should not have been so stupefied by the following events. Let me start by saying that I have always wondered how I came away from the TS genetic pool with just some eye twitching when I was tired.

My dad has had mild tics, which our family thought were annoying habits until my son was diagnosed with Tourette Syndrome (severe tics) at the age of 6. My daughter seemed to only have mild facial grimaces when fatigued or nervous. My problems were different.

After many years of being on medications for depression and anxiety, I was noticing that I felt uncomfortable in my own skin. This past fall, I realized that I could not sit still on the couch and was jittery yet exhausted, and my body was having a strong startle reflex so that my shoulders would seriously jerk suddenly (almost like an electric shock).

Having spent the past 20 years blaming every symptom on my tendency for anxiety, I came to the inaccurate conclusion that my medication must not be working well anymore. With this belief, I went to my doctor to discuss changing medications with the intention of getting better results. Continue reading →

Sniffling tic causes problems with sleep, draws unwanted attention

Posted on February 10, 2012 by SheilaD

My 11-year-old son was diagnosed first with chronic tic disorder and most recently Tourette Syndrome. Both my husband and father-in-law had undiagnosed tics as children, with some residual effects into adulthood.

The toughest tic we are currently battling is my son’s sniffling tic, which is noisy and draws unwanted attention to him. He has a 504 plan at school for breaks if he needs them. Currently, this sniffing tic is affecting his ability to get to sleep. We have a neurologist appointment coming up, so we’ll see what happens.

Son battles hard, functions flawlessly under duress

Posted on February 10, 2012 by EllenT

My family and I have been experiencing some extra stress over the past few months. As many people know, life can get more and/or less complicated at any given moment — especially in families with Tourette Syndrome.

My updated story has ups and downs, twists and turns and a miracle.   As I have mentioned before, my son, B. has Tourette’s-plus and Crohn’s Disease, and is presently slowly working toward a college degree.

His dad and I have made extra help available to him for his organizational needs and academic support. Because he is incredibly motivated and positive, B faces the daily struggle of a rigorous college program — even though just getting himself to classes on time can be an ordeal.

Executive functioning is a huge challenge for him at all times. But on Jan. 7, he showed us how amazingly he functions in an emergency.   Continue reading →