I had posted on JW's facebook page awhile ago that we struck out with his neurologist. Very disappointing to say the least, especially after rereading my post from our first visit with her. We visited with JW's pediatrician and she has referred us to another neurologist in Wichita and we are working on getting an appointment for next month.
This month we are raising as much awareness as we can. JW took it upon himself to ask his teacher if he could teach his friends about epilepsy. We were so proud he did this on his own and thankful that his teacher supported him and helped educate his class. Today he took his wristbands to school to hand out to his friends and it was so neat to watch him do that.
JW has had only 1 seizure that we know of since March 2, 2013. We are very blessed and thankful for this. This time last year, JW's seizures were increasing and becoming more complex. We have since changed treatment and found relief from seizures but are still adjusting to the side effects from the medicine. Because he is not currently having seizures some wonder why we still put so much into posting and fund raising and sharing and talking, etc. The reason is simply this, THERE IS NO CURE. No he is not having seizures now, but they can come back at anytime. It could be tomorrow, next week, 2 years, 10 years. Epilepsy is unpredictable. We also have many new friends that are not so fortunate right now. Last week a little girl's parents were almost forced with the decision to put their daughter in an induced coma to give her a break from her seizures. Just 3 days ago, another little boy had a seizure over 2 hours long and still hasn't recovered. Another friend was feeling some relief that the seizures were subsiding until her little boy had another one last night. These stories happen daily and they can happen to anyone at anytime. Families are faced with so many things and sometimes all at once. They deal with coping with seizures (before, during and after), the horrible side effects from medication, hospitalizations, financial burdens, brain surgery and unfortunately death. So we will continue to raise awareness until a cure is found and we hope that you will join us in that mission too!