This leg of my journey has been the most difficult one by far....
The very early years were filled with many challenges, all somewhat in my power to manage. Mentally EXHAUSTING but manageable.Between the ages of 5 and 6 I saw a change in Steve's behavior. He seemed more anxious than usual. He was diagnosed with OCD and ADHD. Finally it was time to look into medications that could help with these behaviors and improve his quality of life. The writing had been on the wall for a good six months that we needed to explore this path. I knew I had to be mentally ready to go this route. It was a very difficult decision, one that I wrestled with for quite some time. It was hard for me to imagine administering medication to a child who has great difficulty verbalizing how he feels. What if he is feeling sick from the medication and can't tell me? Finally when I knew in my heart that this was the path we needed to go down I took a deep breath and made the phone call for a consultation. I remember the day well...I felt confident that this was the right choice for Steven and our family. No longer did I wonder how would I know how he was feeling, I realized that I always know how Steve is feeling by looking in his eyes. He is a true extension of my heart and soul.
Since people with WS are "neurologically wired" differently than others it was important to find a psychiatrist that was familiar with WS and had worked with children with WS.
Our very dear geneticist Dr. Barbara Pober highly recommended a psychiatrist who she had worked with at Yale when she was working at the WS clinic there.
I think if you are a parent almost at the end of your rope mentally (as I was, no shame in that!)it's important to keep in mind that even though you are making an effort exploring different medications you probably will not get a "quick fix" and if you do you are soooo very lucky! Here is a brief history of the medications we have tried....
Celexa, Ritalin, Adderall, Strattera, Guanfacine, Prozac and we just started Risperdal. With a couple of the medications the reactions Steve had were disturbing. I specifically remember giving him Ritalin. You would look in his eyes and he just was not there, he was loony and could not escape his own body. Finally it would wear off and I could take a deep breath and say, "OK, I tried and it did not work", on to the next. Many of these meds take time to build up in your blood system in order to see if there are any benefits. We tried all of the mentioned meds at different doses and in different combinations. Often the combination would work but then a few months later we would be ready for a change. At times it's one step forward and two steps back but at the end of each day I put my head on my pillow and I know I have given Steven 110%!
We have been on the medication route for two years now and our journey continues...
