This is a follow-up to my blog called Preparing fof the first long-term video EEG . . . Read on if you want to know what life is like when your child is first diagnosed with epilepsy. In my previous post I described the process of putting on the electrodes for a long-term video EEG. We were situated in our room and now we had to wait.
At the beginning of our stay in the hospital for the long-term EEG my son had a smile on his face. The technician was gone and he could be at ease. We watched a video while a nurse took his vitals. My son also made his selections from the dinner menu. The nurse gave me a tour of the area and explained how the couch folded into a cot. The plan was for me to stay at the hospital with my son. Eventually a neurologist, followed by an entourage of medical students, came and talked to us. He explained that our goal was to capture some of these seizures on the EEG and the video. My thought was, “No shit,” as if we didn’t know why we were here. I dislike it when a doctor acts like you are a two-year old when they explain something to you. On the other hand they need to keep it less technical so a parent can understand. I don’t think this doctor knew how to manage that balance. My immediate instinct was caution; this is one I will have to watch.
Day one ended pretty quickly. So far my son was doing fine. There were a few times when he wanted to get off the bed and I had to coax him to stay. At this hospital the patient had to be on the bed in order to be video taped. In the evening my son had a really brief seizure which was facial focused with the eye tugging and blinking. My husband left and said he would be back the next day. So it was just me on my son… and the nurses. Every three hours they came and checked my son’s blood pressure. The only other momentous thing that happened that day is that they discontinued the Tegetrol. The drug had caused some behavioral side affects and we planned to change medications. Plus the hospital was the safest place to stop a medication. Sometimes when you are decreasing the dosage of an anti epileptic drug it can invoke a seizure. With some drugs you can’t just stop the drug. Instead the body had to be slowly weaned off the medication.
It is sad to say, but in this case we wanted my son to have his seizures so that the doctors could evaluate them. It is a very odd feeling. As a parent, I was in “protect” mode, but was now faced with wishing my son would have a seizure. It just isn’t natural for a parent to wish this.
The first big surprise was that they insisted that the lights be on in the room at all times. All day, no problem. All night. What? All night. This was 2002 and this hospital’s cameras needed light in order to film my son. There was no concern that my son’s sleep would be affected. In fact they hoped it did affect him because at times sleep deprivation can trigger seizures. Unfortunately it isn’t just the child that is affected. So is the parent. That night it was late before my son fell asleep. He wanted to lay by me and I had to coax him to stay on the bed. I pulled the cot close so that he could see me and he could hold my hand. Finally he slept.
Throughout the night the nurses came in and tested his blood pressure and checked on him. Sometimes he would wake up and sometimes he didn’t. Finally we made it through the night. I was exhausted. My son, on the other hand, was starting to get fussy. The environment wasn’t new any longer. He didn’t care about their toys, and he was tired of the videos. He desperately wanted off the bed and was irritated that he couldn’t and that this big pony-tail of wires was restricting his movement.
That morning I waited for his seizures to start. At home he usually had a round of seizures that started at about twenty minutes after he woke. This happened consistently, which made me so confident that we would capture the seizures on video and EEG. So I waited. And waited. My son had been awake for about an hour. Breakfast had come and he ate. Still no seizures. Another hour passed and still no seizures. In my mind I took note that this was odd.
After breakfast I helped my son wash up. Perhaps freshening him up would improve his mood. We played some games that the hospital had available. Soon lunch came and my son ate. Later in the afternoon he took a nap. Actually we both took a nap. We were exhausted.
Later that afternoon my son woke up. Soon after waking he had a small round of seizures. Sadly to say I was excited to see them happen. We also talked briefly with the neurologist on duty. He indicated that they would evaluate the event. He wanted us to remain in the hospital so that they could capture some more of these seizures. Plus they wanted to monitor my son since he was taken off of the Tegretol.
There is so much pent-up stress when your child is sick and the doctors can not correct the situation. Up to this event, I thought doctors were miracle workers, and in some cases they are. Unfortunately that was not the case for my son. It is this experience that showed me how little the medical community knew about the brain. It was also true that prescribing anti epileptic drugs was a trial and error circumstance; with epilepsy the patient was the guinea pig. This situation also showed me how important it is for a parent to advocate for their child.
We stayed two more days. My son had a few small seizures, still nothing like he had at home. At this point my son was cranky. He was tired of the environment, tired of the doctors and nurses, tired of being imprisoned by the bed. The electrodes were bothering him. He had started rubbing at them, especially behind his ears. The gauze wrapped around his head was making him hot and he wanted it off. By day three the connectivity had reduced, even though the technicians repeatedly would come and add the pink gel with the blunt end of the syringe-like device.
Over the three days we had seen the same neurologist who was on duty that week. On the morning of the fourth day the neurologist came in and said that they would be discharging us. He said they had evaluated the test results and the events that we had captured were not seizures. After saying this he started walking out the door, acting very dismissive. I called out to him. “Wait a minute.” He stopped as I walked toward him and I asked “if they are not seizures, then what are they?” He turned to me and said “I don’t know,” and turned to leave.
Now I was angry. My emotions were raw. My son was not well and I wanted the doctor to help him. The last three days had drained me, both physically and mentally. I had thought if we could just get through this we would then have the answer and the doctors would know what to do.
The realization hit me that we had endured all of this for nothing. On top of it all I was facing a neurologist who was acting like he didn’t care. Was he just going to leave us hanging there? No diagnosis. No solutions. Nothing.
The doctor turned to leave and I grabbed his sleeve saying, “And now what? Hold on and listen to me. I don’t care that you have other patients to see.” With anger I continued, “I don’t care that you may have a child across the hall that may be dying. Listen to me. I don’t care. This is my son and he deserves the respect and attention just as much as any other child. We have a problem that needs to be addressed”. The doctor turned to me and said I should make a follow-up appointment with our regular neurologist. She can then determine the next steps.” And then he walked out.
You can imagine how I felt. I was angry. Very angry. There was nothing that I could do at the moment. So, I helped the technician take off the electrodes. To do this they put a solution on my son’s head to get rid of the glue. They slowly one by one removed the glued tape off the electrode. Once they were all removed they washed his hair to get all of the glue out. My son had tight curly hair and after I got him home I saw that he still had a lot of glue in his hair. It was really hard to get out. So finally we were free. My husband picked us up and we went home. My son was elated.
To Be Continued . . .