Our first daughter, Anna, was born on June of 1996. My pregnancy seemed pretty normal but things changed quickly during delivery. During labor, Anna’s heart rate began to decline to 54 bpm and continued to drop. The OB was urgently trying to induce labor without medications and forcing her out with forceps. After 1.5 hours of labor, our baby girl was born. We didn’t see her right away because she was immediately whisked away to a table out of our view and one of the doctors performed CPR. The placenta had stopped providing her food and oxygen in utero which caused her fetal distress. We knew she would have developmental delays from the beginning but had no idea the long road we had ahead of us.
From birth until she was 5 she attended weekly therapies privately and through our infants and toddlers program. These therapies helped her learn to walk and communicate. She may not have met her milestones, but she did make progress and she was happy. When she turned 2 and 3 she began walking and feeding herself and was very expressive letting us know her needs. She loved all kinds of foods and could eat anything. When she turned 2, the daily drop seizures began. This is when our entire world changed. We were not familiar with seizures but unfortunately we had to learn quickly. Anna started medications but overtime her seizures persisted and became more frequent and more intense. Her drop seizures turned into tonic clonic seizures and she tried many types of medications with no success. Eventually, her progress began to stagnate and then she started to regress. Skills she had been working so hard to master began to disappear. Every two steps forward became three steps back.
Her seizures have been so frequent and intense we would have to try to hurry through meals before she had a seizure. Her postictal symptoms last 1/2 hour or longer and include nausea and exhaustion and loss of appetite. Her seizures began to affect her ability to chew and swallow and she began to lose a lot of weight. When she turned 5 she had to have a feeding tube placed. She has regained her ability to eat and we now use the feeding tube to feed her ensure when seizures interfere with her ability to eat. Her foods need to be soft and chopped and she requires about an hour to chew and swallow a meal, drooling the entire time.
It often seems as if epilepsy controls our lives. We visit the neurologist every 3 months to discuss possible new treatments or medications. She has been taking anticonvulsant medications for 15 years and none of them have been effective. Anna has tried the ketogenic diet, undergone surgery to have a vagus nerve stimulator implant, and at the age of 16 she had a corpus collosatomy to stop the seizures from traveling from one hemisphere of the brain to the other (tonic clonic seizure). She currently takes 3 different medications 3 times per day and has 3 tonic clonic seizures per day.
We have tried everything possible to give our daughter a better quality of life. Trying medical marijuana is the most viable option she has left. If it has helped other children,, Anna and other kids like her deserve a chance at that miracle.