Swam in the ocean today saw a beautiful rainbow, and thought of our time together, a perfect send off thank you…. Thank you, Hana, for everything.
You helped me change my destiny… you helped change the destiny of my son.
Thank you, thank you and thank you
Our Long Road from Heartache to Happiness
Each time I sat in the stands with other soccer moms, I knew what they were thinking without them saying a word: “Geez, why did Taylor miss that ball by a mile?” “What does she think she’s doing, running straight into that girl?” “Why is she constantly shaking her head?”
I couldn’t have cared less how the game turned out. I just wished with all my heart that my beautiful 8-year-old daughter could see the field and ball 100% of the time, wished she didn’t have Tourette syndrome, wished her eyes didn’t roll back in her head — hundreds of times a day. I so wished she could keep her eyes focused on the ball she had intended to kick, and that she could anticipate the movement of others on the field.
Taylor had a passion for soccer, and my husband Brian and I supported her dream. But truth be told, I dreaded the games.
Taylor’s tics started in September of 2007. We were soon dealing with the frightening eye rolls. Her eyes went up and back into her head and stayed there for several seconds at a time. She shook her head (much like a dog does to get water off) until her neck was physically hurting her. And with sudden flailing of her arms, we’ve watched many an object fly off the kitchen table. I was so worried about the eye rolls that I videotaped her for the pediatric psychologist to be sure they weren’t seizures. They weren’t.
Along with the tics, and equally debilitating, were mood swings with significant depression, attention deficit hyperactivity disorder (ADHD), and an over-riding sense of anxiety. Taylor clung to me in public and had full-blown, screaming-lie-on-the-floor-meltdowns at home. In a nutshell, life was miserable for her, and as parents we grieved for her and felt the strain.
About a year after Taylor’s tics started, her younger brother Nick started ticcing, too. Fortunately his remained mild and he did not have the other issues Taylor was dealing with, but we dreaded what the future might hold for him.
We decided to face things head on with an integrative approach. We took Taylor to psychologists, psychiatrists, and neurologists, locally and at leading Children’s Hospitals. She had an EEG, MRI, neuropsychological evaluation, vials of blood drawn, all to receive diagnoses of ADHD, Tourette’s, depression, and an anxiety disorder. A number of medications were tried over time, including Clonidine, Abilify, and Risperdal. None of them worked and the side-effects were a serious concern. I also looked in to PANDAS and thought that might have been the answer, but it was not.
We read Sheila Rogers’ book Natural Treatments for Tics and Tourette’s and started the kids on the Feingold diet. I logged many hours on the Latitudes.org Forum, sharing with other parents. Our home had a major mold problem around the time these difficulties started, so we saw an environmental physician and had an environmental allergy assessment completed. We learned Taylor had a number of hidden inhalant allergies (including mold), food sensitivities, and an imbalance of amino acids. Nick was also seen, and both the kids started regular allergy injections, dietary changes, and select nutrients. This intervention clearly helped their overall health, and we have continued with the program, but Taylor was still ticcing with a vengeance. One of her now fifteen doctors suggested we consider neurofeedback as an additional therapy. That’s when life began to change.
Nine months ago we all headed to the Los Angeles area for neurofeedback sessions conducted by a national expert. At this point, Taylor had been on 2.25mg/day of Klonopin for 5 months for her anxiety. The trip was especially costly because we needed to stay in the area for two weeks and we lived in Florida — about as far away from the clinic as possible! Yet we saw improvement and I’m glad we went. The improvement was balanced by the cost of the trip. Our credit cards were now maxed out.
After the neurofeedback sessions, Taylor was able to reduce her Klonopin to 1.5 mg/day and her tics were reduced in severity and frequency. Nick’s mild tics went away completely. We rented the machine to continue sessions at our home, north of West Palm Beach. To our disappointment, Taylor’s progress reached a plateau. She managed to keep the gains she had made, but significant tics remained and the depression and anxiety were still a problem. We couldn’t seem to break through to the next level. Taylor began 3rd grade the day before her 9th birthday, and no longer had meltdowns about school, but she still had to work twice as hard as the next kid.
Then life took another major turn! My brother Pete is an alcoholic. He’s a great guy and was managing to stay sober, but told me that each day was a struggle. One day he announced that he had learned of Brain State Technologies, a type of brain training that has helped many people overcome addiction. He flew from Florida to Scottsdale, Arizona, for sessions, and came back a changed person. He said his desire for alcohol was simply gone. While there, he learned that the program was being used for people with a range of symptoms, including ones Taylor had.
While we wanted to look into it, what could we do? My husband and I are teachers, and we were already broke from all the money we had shelled out so far in trying to help our kids. Yet we sensed we were close to a breakthrough. Another problem was that Taylor had already missed so much schooling with doctors’ appointments and health problems that she’d repeated second grade at our suggestion, to fill in missing gaps in her education. I didn’t dare take her out of school for another trip. The answer? Brian and Pete decided to fly out to the Brain State headquarters in Scottsdale, take training classes, and bring the equipment back for Taylor. Thanks to a generous family, we were loaned the money to purchase the needed equipment.
The results have been very exciting. After 30 sessions, Taylor’s tics were reduced by 90%. Her anxiety? Gone. Her depression? Gone. And she’s getting As and Bs in school.
Needless to say, we are thrilled. It’s been a long haul. But I can now watch Taylor on the soccer field without a knot in my stomach! We are leading a normal life once again, and we are so very grateful.