Madison JoAnn is our beautiful 15 year old “Sweet Girl”, as nicknamed by her Mema before she was even born. Madison was always a shy little girl, or so we thought. Starting at about age 3, when strangers would talk to her, when she was in trouble, and sometimes just because, she would flutter her eyelids for several seconds. At first, we would tell her to stop rolling her eyes at us. Over time, we simply got used to it. Then in October 2009, a few months before her 11th birthday, she had a mild tonic clonic seizure. It was so mild that we didn’t know for sure what had happened and she was sent for an EEG. Due to a mistake, the results were never sent to her doctor and we assume everything was fine. Then 6 months later, she had another, but this one was anything but mild and we took our first ambulance ride to the local Children’s Hospital. Her EEG results were there waiting for her and showed abnormalities and it was then that we discovered that her shy girl eye flutters were actually absence seizures. Looking back, it is clear as day, stress is a big trigger for her. Strangers, being in trouble or even being embarrassed or tired would cause the absence seizures to present. We would learn of many more triggers over time and, unfortunately, we learned about all of them the hard way.
The absence seizures began to cluster and end up in tonic clonic seizures on a regular basis. This cycle became Madison’s normal and the neurologists had no answers. Medication after medication, nothing seemed to stop them and the side effects of the medications were sometimes just as bad. Our Sweet Girl wasn’t happy and the medications weren’t working. There is nothing more devastating than a neurologist telling you there is nothing more they can do for your child. We refused that position and moved forward, searching for a way to make the seizures stop.After 3 years, 2 neurologists and no less than 7 different medication combinations, we found an epileptologist who prescribed a combination that controls the tonic clonic seizures, but to this day, nothing has been able to stop the absence seizures. A recent EEG shows that they are “abundant”, 4-8 seconds long, day and night. These seizures impede her ability to learn and she struggles in school, they make it difficult to meet new people and even more difficult to remember things. The medications have ruined her memory.
Madison is also photosensitive, so watching certain movies or being around strobe lights or flashing lights can cause absence seizure clusters. The hardest part about these seizures is that if you don’t know what you’re looking for, you might miss them. When you hear about children having hundreds of seizures per day, you imagine convulsions, but Madison’s are different, they hide behind her eyelids where most people don’t notice them. Teachers don’t see them and struggle to understand why Madison needs help. We have had to fight to get her the help she needs to succeed, and even still, it isn’t enough.
Imagine losing 4-8 seconds of your life all day long…like watching a movie and you keep missing pieces. We would do anything in our power to take this away from our beautiful daughter.
We are so very excited to try CBD Oil. We know, like we’ve known with every medication change, that nothing is certain and that it may not work, but we have to try. How could we not? We thank our lucky stars for the amazing work of the fearless lobby of Utah Moms who fought for all of our children and gave us the legal right to try this oil. We count ourselves lucky to call them friends. Maybe next time you see this gorgeous face, it will be free of the seizures that rob her of experiencing her life in full and steal so much of her sweet smile!