We had Parker’s video EEG a few weeks ago and I didn’t know what I wanted the results to show. On the one hand, I hoped the EEG would reveal that Parker was having his continuous night seizures so that he would get the treatment and hopefully start speech rolling again. On the other hand, I was hopeful that all the current treatments are working and we would not have to do more. I also didn’t relish the thought of staying in the hospital for 3 nights and I was worried about Parker getting heavy doses of Valium. It sounds like a treatment that has had good results, but, it is a bit scary to drug him up so much. In other words, I really didn’t know what I wanted this hospital stay to reveal. I decided that I needed to put the outcome into God’s hands and ask for his will to be done.
The EEG showed that Parker was having constant seizure activity during sleep which has been shown before. Other than the basic treatments for epilepsy, we didn’t ever hear about anything that could be done to help this specific problem. Apparently, this treatment is pretty new and has had a lot of success. There were a couple of other treatments we could’ve tried, but, one involves steroids and the other means driving back and forth toConcordevery day for IV’s. I did not like those options very much. The Valium seemed much more benign. The first dose involved an overnight stay in the pediatric ICU to enable close monitoring. The dose was extremely high, the amount that Parker’s dad would receive. Within 20 minutes of Parker getting his first dose delivered rectally, he began falling down as if drunk. He fought going to sleep as much as he could, but, the Valium won!
For a change, Parker slept for a long time and slept quite peacefully. The doctor said that the EEG was remarkably changed from the night before as his brain was quiet and he really slept. Usually his brain never stops and he doesn’t really rest. It is actually quite sad that he probably never feels rested. I just wish we could have done something sooner than at 11 years old. I feel terrible for him and the fact that he can’t talk to tell us what is happening to him or how he feels. I just hope this treatment works and that we can get through the side effects. The doctor said that some of the kids don’t have any of the doping effects from the Valium. Unfortunately, Parker is not one of these kids and we realized we were going to have to be patient and allow his body to adjust to these meds.
When he awoke after the first dose, he began eating breakfast and took his meds and within 30 minutes of taking the Valium he was drunk again! He had a difficult time doing anything including eating which is always a worry as he cannot afford to lose weight. After about 8 hours, the effects finally started wearing off and we began to see our child again. After returning home and Parker not doing better on the meds, we called the doctor and he decreased his meds a couple of times. Unfortunately, Parker had several days of eating very little and even after reducing the meds, he still needed to eat before taking meds so he wouldn’t slow down or stop eating.
We are getting close to the next admission to the Epilepsy unit to see how his brain activity is doing and see if the treatment has worked. We are so ready to get Parker off the Valium during the day. We are okay with the night dose as he is sleeping better than he ever has. We shall see what the test shows. I know that God’s will will be done.