Non-Progressive Encephalopathy
Danny’s first official diagnosis, other than Epilepsy, was non-progressive encephalopathy with global developmental delays. Basically what this meant was that something was wrong with Danny’s brain, hindering Danny’s development, but what was causing it was unknown. We do know for certain that it is genetic, stemming from Maggie’s paternal side. Other than that it remains a mystery. Danny has a cousin, Tricia, who has spastic quad. Cerebral palsy (CP). While Danny’s neurological condition affects him mainly in the areas of cognition & seizures, Tricia’s are primarily physically disabling. While Tricia cannot walk, and only has limited use of 1 hand, her social skills have always been advanced in retrospect to her diagnosis. Might I add that she is very social, observant, beautiful, and bright! Many other people in our family have, or currently suffer from neurological problems. Hopefully someday we will find a doctor to solve this mystery.
Seizures
Danny and Kenny both have Epilepsy. Danny had his first seizure at 5 months old and was diagnosed with Epilepsy at around 18 months of age. Kenny had his first seizure and was diagnosed just a few days shy of his 7th birthday. The doctors told Kevin & me that there was a 6% chance that both of our children would have Epilepsy. Kenny’s had 3 grand mal seizures, but it is a blessing that he is controlled very well with medication. We remain hopeful that he will grow out of them. The most challenging part for him is that with the Epilepsy brings struggles in areas such as learning & memory. There is also the battle over medication side effects. Kenny is such a strong young man; I doubt that most people even realize he has Epilepsy. He does not let any of these challenges stand in his way. Danny’s seizures are intractable. This means that his brain does not respond well to anti-convulsant medications. We have been told that Danny will perhaps never see his last seizure. Danny has had concussions, stitches, and been banged up pretty bad due to falls during seizures. Sometimes he can go about 6 weeks without a seizure. Right now he is averaging one per week. Danny has tonic clonic (grand mal), myclonic, and complex partial seizures. In December he had a VNS (Vagus Nerve Stimulator) implanted to assist in controlling his seizures. To learn more about the VNS, please click on the link provided on the links page of this website. Upon discussions with 4 Paws, we recently decided to have Danny’s service dog trained for seizure assistance.
