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Olivia was perfectly healthy and developing completely normally until she was 4.5 years old. In May 2011, Olivia was found having a tonic clonic seizure while taking a nap. She had no fever at the time. EMS was called and they were finally able to stop her seizure. It had lasted at least 30 minutes. Olivia was then admitted to Wake Med Hospital for 4-5 days for extensive tests. She was started on her first anti-seizure medication and sent home. Since seizures are most likely to happen when falling asleep or waking up, Olivia slept with us for about 6 months. I was so scared that she would have another seizure and I would not know. After her first seizure, Olivia went 15 months doing very well and we started to relax more. We were being seen at Duke Neurology at that point and it was decided to try to wean Olivia slowly off her medication. The first day completely off of the medication she had another tonic clonic and was given the diagnosis of epilepsy and started back on her medication. Shortly after that she began to have occasional break through seizures. When we raised the dose slightly, Olivia began to suffer horrible behavioral side effects. For the last 16 months, we have been trying to find a medication that will control Olivia's seizures without debilitating side effects. Olivia has had hundreds of seizures now and at least 4 different kinds. She has failed 9 medications and various combinations of them. Olivia has the diagnosis of medically refractory focal epilepsy which means that medications do not control her seizures. We were told after you fail two antiepileptic medications your chances of finding one that works is only 0.2%. Olivia had an inpatient stay for 14 days at Duke this spring. We also have gotten a second opinion at Cleveland Clinic in Ohio which also included a two week inpatient stay this fall. It was determined by all of the tests and procedures that Olivia has been put through that she is not a surgery candidate at this time. She is also not a good candidate for VNS or the ketogenic diet. The best doctors in the country have told us that there is nothing more they can do now except to continue to put her on different medications which will most likely not help her. We are given the choice of standing by and watching our beautiful, smart daughter suffer horrible seizures which can cause brain damage or to give her drugs which do not control the seizures and give her horrible side effects. The side effects that Olivia has personally had due to these prescribed medications have included major hyperactivity, difficulty concentrating, difficulty comprehending basic information or directions, intense agitation and aggression, socially inappropriate behavior, being extremely "doped" up to the point of not being able to function at all, dizziness, increased seizures, headaches, vomiting, apathy, decreased appetite, visual changes, etc. We are hoping to try a cannabis strain that has less THC in it than hemp that has helped other children like Olivia remarkably. She has no other hope right now. We can not stand by and let our intelligent, sweet daughter have her brain and dreams destroyed. She deserves the right to live up to her potential. That chance should not be taken away from her because of what state she lives in.
When I went to wake Olivia up this morning around 7:15am for camp she was having a seizure. She wasn’t able to respond verbally to us at all for somewhere between 5-10 minutes. We have no way of knowing how long the seizure was happening before I went into her room. Then she began to slowly come out of it. She was very sick and feeling quite horrible until around 1pm this afternoon and then she slowly started feeling better. She has been able to keep some crackers down and hopefully will be able to have some dinner. We now will need to start our seizure-free count over again to try to reach the two year mark where we could potentially start decreasing her Depakote. Please send some positive thoughts our way because it has been a very difficult day for all of us. Thank you all for your support.
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