Harper Leigh Johnson's Story: November 2012

The past two months have been full of ups and downs as always. My typical progression is that I tend to regress in on area (gross motor, fine motor, or eating) just before making a leap in another area. We have all become use to this so there is usually little worry when I lose a skill. However a month ago I lost skills in all areas. I stopped eating anything but baby food, stopped using my hands for eating and picking up toys, and stopped sitting. This went on for about two and a half weeks and Mommy, Daddy, and even my therapists started to worry. We were concerned that things were taking a turn for the worse and if we needed to stop the Potiga, as it might be having an adverse effect. Then a week and a half ago I woke up after a very difficult night and started to eat, not only eat but biting on foods, which I have never done before. Later that morning Mommy and I stated working on my gross motor skills. Mommy put me down on all fours and I stayed!!!! I didn't rear up and yell and scream which I usually do. No one had to touch or hold me. Then I started to rock and even moved my arm and leg. This was HUGE!!!!! .....an answer to a million prayers.

Mommy has been working hard to try and reach out to others who are struggling with the same mutation. We have found families to 3 others states, one in Canada, and we believe there are two other families here in Colorado. We started a yahoo group for those with KCNQ2 so we can network. Our doctors are in the process of getting a study up and going to see if the medication I'm on can help other children with their seizure control. We are in the middle of another medication increase, as we are still not sure if my progress in related to the medication or my natural path.