Cerebral Palsy



Jacob is our 11 year old son who was born 3 weeks early. Shortly after he was born, we noticed he’d have episodes of turning really red and blue in the face and his body would stiffen. The doctor and nurses took him into the NICU to be monitored for a while. At just a few hours old, we were told that he was having seizures. He then spent 10 days in the NICU before coming home on that Friday. We were to go to Egleston for a test that Monday. Little did we know that he’d have a 2 1/2 minute seizure in the elevator and end up being admitted to Egleston where we would be for the next 5 1/2 weeks. During the stay, we worked with to find a medicine to help “control” the seizures. He was placed on phenobarbital which helped for a while. As he’s gotten older, we’ve been through quite a few medications that would help for a little while before having to switch to something else. Currently, he’s maxed out on 3 different medications all while still having seizures daily. Through the past 11 years, we’ve had countless ER visits and hospital stays due to his seizures. We have spoken with Jacob’s neurologist, Dr. Holt, who has seen Jacob since being diagnosed with seizures. He truly believes that Jacob could benefit from medical marijuana. In hopes that we can get him off the phenobarbital, which is maxed out in the toxic range but is also the most helpful medication for Jacob to control his seizures. As a result, the medicine has effected Jacob’s liver enzymes, making him unable to take Tylenol and a few other medications.
Jacob’s other diagnoses include cerebral palsy, cystic fibrosis/aspirating pneumonia, failure to thrive and is legally blind. Despite everything, Jacob is one of the happiest 11 year olds I know.


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