We just completed a scheduled overnight stay in our local hospital for a 24 hour EEG. The test was ordered in March by Gabriel’s, epileptologist. After 2 years of almost complete seizure freedom, it was time to take a long close look at Gabriel’s brain and see how things are doing. With Gabriel’s form of epilepsy, Doose, there is a chance that his brain will essentially heal and begin controlling seizures. This has always been our hope and prayer. When the doctor suggested the 24 hour EEG, he mentioned the possibility of weaning medication (IF the test results showed the brain was improving). He mentioned that there is a 30% chance of the seizures returning as a result of a wean. At the time I thought, “Oh HELL, NO! There is NO WAY on earth I am risking putting my child’s body through seizures again”. I pictured myself levitating movie style and landing between the doctor and my son in a defensive ninja stance. My mama bear instincts were on full alert! We didn’t tell many people about this doctors visit at all because we did not want to deal with thought of having to make a decision that could cause our child to have seizures again.
Fast forward 6 months, and we finally get the call from our hospital to schedule the EEG. The doctor had told us that scheduling was a few months out, however we had begin thinking we had dropped off the radar and were never going to get called. When they did finally call and leave a message it took us a couple weeks to call back and schedule the test. Did we really want the results? And the weight of making hard decisions based on those results? We finally decided to schedule the test and get it off our plates.
In the weeks leading up to the test, I began to hope and dream of getting test results that indicated Gabriel’s brain had healed. What if he was the 1/3 of patients whose brain matures and starts working correctly? What if we could get him off all the meds? Would his creativity and intelligence be able to shine through again? I allowed myself to think of the possible good outcomes instead of just fear the bad possibilities.
The day of the test Gabriel woke up excited to go to the hospital. His memories of the hospital are all good, so thankfully it is easy to get him ready to go. By 8 a.m. he had packed a huge bucket of toys and was ready to go. He did not like getting the electrodes placed on his head (the glue was stinky and they used a little vaccuum that blew cold air to set the glue). He got very worried when we called the electrodes wires. So we changed out language and talked about them as strings, then he was fine. He was scared and held my hand very tight for the hour it took to get hooked up. He was still brave and kept his head on the pillow. He even giggled a few times. As soon as he was allowed to move he wanted to sit up, get off the bed and play.
We had our own toys, plus toys given and loaned to us from friends. He had a good time playing. His energy levels were much lower than normal and he kept saying his head hurt. I am sure having all those things attached to his head was uncomfortable. He made sure that either Chuck or I was right next to him every minute.
In the morning he was very happy when the nurse asked if he was ready to get unhooked. He even made a comment about how good the tech was at combing his hair.He loved the room service and ordered Pizza, Pancakes and Blueberries for every meal.
Before we were discharged, a neurologist quickly reviewed Gabriel’s results and gave us a quick run down. Long story short…there were no seizures recorded (YAY!), but there was a lot of background activity (not good). The background activity decreased when the meds were given and increased as the meds wore off. This would indicate that the medicine is doing it’s job and it is what is stopping the seizures. The background activity was the most pronounced overnight. This doctor was just giving a quick report and not familiar with Gabriel’s whole history, so no decisions or official advice was given at that time. Gabriel’s doctor will follow up on the phone in the next few weeks and we will see him in our regular clinic visit in February.
After my initial ninja stance,HELL NO attitude, I was surprised at how sad and disappointed I was to hear we still need the meds. I am unbelievably thankful for the felbamate, which is stopping the seizures, but sad that we still need it. We are also painfully aware that just because a medicine works for a while doesn’t mean t will always work. The test results also reinforce our vigilance in monitoring Gabriel while he is sleeping.
Through all of this the bible verse that has been resonated with my soul is Romans 5:5 “and Hope does not disappoint us, because God has poured out his love into our hearts, by the Holy Spirit, whom he has given to us”. So I cling to hope that Gabriel’s brain will mature and start doing what it needs to and that seizures will be officially gone from his life….the sooner the better. I hope that if he brain doesn’t heal that we can continue to have freedom from seizures from the miracle of modern medicine. My eternal HOPE, as always lies in promise of eternity free from suffering and pain.