Warning: This is a long post but hopefully not too boring. :)
As many of you know, Hanna suffers from Epilepsy (a disorder where she has reoccurring seizures). She started having seizures when she was 6 years old and over the past 8 years we have tried dozens of medications to try and control them. We've dealt with medicines that help but carry serious side effects, medicines that work for a while and then stop and medicines that help but don't completely control the seizures, even at the highest dose possible (while still being safe). Most medicines carried unpleasant side effects including zombie like behavior, suicidal and homicidal thoughts, aggression, nausea, double vision, clumsiness, shaking...the list goes on.
About a year or so ago, her neurologist referred us to an epileptologist, which is basically a doctor that specializes specifically in Epilepsy. We love her doctor! He is kind, considerate and really listens to us. After months of having trouble with medication side effects, her doctor placed her in a different class of epilepsy. It has a long fancy name that I can't remember off the top of my head, but basically it means that medication won't control her seizures. He said there was about a 4-5% chance that a new medicine would help. In fact, there are only 5 medicines in their arsenal that we haven't tried before.
Anyway, long story short the doctor decided to do some testing to see if brain surgery might be an option. So Hanna was admitted into the hospital for a week for video and continuous EEG monitoring.
Lately Hanna's seizures have been following a cycle. She'll have a lot of seizures (8-12) within a 24 hour period. Then she'll go a week with no seizure activity. Then she'll have another 24 hour period with seizures. And then she'll go another week without them. It goes on and on...
While at the hospital, she had about 10 seizures starting Monday night and ending on Tuesday night. During this time the doctors were able to watch her seizures and read the EEG. The doctor called her seizures "dramatic". I had never thought of that before because I'm so used to them. She doesn't fall to the ground and shake like a "Grand Mal" seizure but she screams bloody murder, grabs things, smacks her lips and usually falls to the ground. The nursing staff didn't even need me to push the red button to alert them of a seizure...they could hear her all the way down the hallway. After each seizure, she has a confusion period where she tries to run away. It took some work keeping her in her bed.
The doctors said that so far, she's a good candidate for surgery. All of her seizures are the same type and they travel the same way. They start in the back of her brain, travel around the right side and end in the right temporal lobe. Sometimes she would feel dizzy or "starey", and I wondered if those were mild seizures. The tests show that the only seizure activity she is having are the big episodes. I don't know what the dizziness is, but now we know it's not seizures.
On Wednesday they wanted to do another test where they would inject a serum during a seizure that would help them see the blood flow of the brain. They would do the test with a seizure and without a seizure then compare the two. Well, on Wednesday she didn't have any seizures so they did the test without. They took her off of medicine completely hoping to induce a seizure. Well...she followed her typical cycle and didn't have a seizure for the rest of her stay, even without the medicine.
Even though they were not able to get the one test done, they can do several out-patient tests that will help them determine the blood flow and origin of the seizure. If they can pinpoint the origin of the seizure, brain surgery might be a very successful way to eliminate her seizures.
So our next step is to meet with her epileptologist and complete the other tests. I think it's interesting that taking her off the medication didn't induce seizures. It makes me wonder if the medicine is working at all. I guess that's something we'll have to discuss with her doctor.
While we were in the hospital we felt a lot of strength from the prayers of our family and friends. Many people from our church family stepped up to bring in meals every day and take care of the kids while we were in the hospital. Kamary also did well babysitting. We really felt loved and supported during this time.
As of now, Hanna hasn't had a seizure since she was in the hospital. It's been almost 2 weeks! We're pretty floored about that fact, but enjoying her stint of good health.
4 weeks ago