Does your head hurt? Does you tummy hurt? Does it hurt when you swallow? What’s the matter?
These are all the regular questions you ask your little one when he’s not feeling well. Even the smallest child can answer these questions. Back and forth questions and answers and answers are so important when trying to diagnose health issues with your child.
We’ve been trying to diagnose seizure activity in our little girl for the past three years. Our little girl, Allie, is adopted. Biologically, she’s our granddaughter, the daughter of my daughter. At ten months of age, she was shaken and squeezed so severely that she stopped breathing (not by our daughter, in case you were wondering). Paramedics “bagged” her, and she was rushed to a nearby hospital where she was put on a breathing machine. She remained in a coma for ten days. After a week, while still in a coma, she started breathing on her own and seemed like she was on her way to recovery. But when she came out of the coma, it became evident that she had severe brain damage and is a quadriplegic as a result. Additionally, due to lack of oxygen to her brain, she has cerebral palsy.
She can’t walk or eat or go to the bathroom. She can’t talk. She can’t tell us what’s the matter.
Allie began having seizures when she was about three years old. Maybe earlier. She had one seizure a month that lasted about a minute. It’s the longest minute of your life.
We’ve had her on at least six different medicines and we haven’t been able to manage them. In fact, her seizures now, three years later, happen about every other night. Plus one of the medicines caused damage to her stomach.
Last week, we were in the hospital having a video EEG. The test lasted 48 hours. The goal was to capture a seizure event on video while monitoring brain activity. This will help our doctor determine whether seizures are epileptic or not.
Allie had a seizure our second night in the hospital. The EEG showed brain activity associated with the seizure. The conclusion: the seizures are epileptic events.
So what does this mean? Well, we continue to try different medicines to manage seizure activity. Extended epileptic seizures can cause more brain damage and even death. Determining the kind of seizures Allie is having is both terrifying and tremendously helpful at the same time. It gives us a way to focus on a plan of attack.
Please don’t feel sorry for us. Allie fills our lives with joy and meaningful purpose. Allie is a very happy little kid.
Pray for Allie and for our doctor. We need wisdom and Allie needs to have fewer seizures. And, if you have the faith for it, pray that Allie will be completely healed. Pray for that even if you don’t have the faith for it. Who knows what God will do with the little bit of faith you do have.
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