For those of you who dont know who Hope and Faith are, they are my twin daughters, they are 7 years old and they have Refractory Epilepsy, (uncontrolled despite multiple medications). We spent 6 1/2 weeks at Cleveland Clinic in Ohio at the end of summer beginning of school with just Hope. Now we are returning to Cleveland with both girls. We have researched a great deal about seizures and epilepsy and the whole process is quite scary. Here is a abstract from Dr. Sperling about uncontrolled seizures. The consequences of epilepsy can be quite severe and include shortened lifespan, excessive bodily injury, neuropsychological and psychiatric impairment, and social disability. There is evidence that seizures cause brain injury, including neuronal death and physiological dysfunction. Mortality rates are 4-7 times higher in people with medically refractory seizures, and injury rates are substantial, ranging from one per 20 person-years to as much as one per 3 person-years. Quality of life is impaired in epilepsy, and relates to seizure control. Psychosocial disabilities, including lower social interaction with reduced marriage rates and reduced employment levels, are more common in people with refractory seizures. Complete seizure control is desirable, since seizures potentially constitute a serious threat to health and well-being. Therefore, satisfactory seizure control should be defined as having no seizures. Treatment should be directed to preventing seizures whenever possible and achieving control early in the course of illness. The risks of uncontrolled seizures outweigh the risks of aggressive medical or surgical therapy. So while the prospect of brain surgery is very frightening, we will not make that decision without being fully informed. However it may end up as the best treatment for the girls. We ask that you all pray for our family and especially the girls as we go through this trial in our lives. God has been so awesome in our lives and we know He has a plan that we may not understand. We are His servants and will rely on Him to see us through this. Thank you all for your love and support. ~Jami, Gary, Matthew, Benjamin, Hope and Faith as well as our fabulous extended family. My beautiful Mom and Aunt (Dottie Sandhoff and Debara Mathews) will keep you all posted when I am not able to be online.
Posted on: Sun, 28 Sep 2014 15:32:08 +0000
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