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. EMS was called and they were finally able to stop her seizure. It had lasted at least 30 minutes. Olivia was then admitted to the hospital for 4-5 days for extensive tests. Her EEG showed a lot of seizure activity. Her brain MRI showed some white matter loss consistent with PVL although she had no history of loss of oxygen. It is still unknown whether or not that abnormality has anything to do with her seizures. Olivia was started on her first anti-seizure medication and sent home.
After her first seizure, Olivia went 15 months doing very well. It was then decided by neurology 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 past two years, 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 10 medications and various combinations of them. Olivia has had two inpatient stays at two different hospitals for 14 days each time. 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 finally decided to try a cannabis strain that has low THChas helped other children like Olivia. She has no other hope right now. She is still suffering daily seizures and the side effects from these harsh medications. 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 full potential. That chance should not be taken away from her because of what state she lives in.
At the end of June 2014, we packed up all our belongings and moved across the country from NC to CO leaving all of our family and friends behind on the east coast. Olivia’s father is still in NC working while her siblings and mother are with her in CO. She is on the waiting list for Charlotte’s Web and will hopefully start on it this October. We are hoping that this will be the answer for our sweet girl.
To read more about Olivia and updates on her progress go to: