We just went to see the Epileptologist and I mentioned the fact that Parker once again was getting his speech going and once again lost it. I explained that this has been a pattern all his life beginning at 5 months old. He asked when our last over night EEG was and maybe it would be a good time to repeat. He said that some kids can have continuous seizures during sleep, but it is very rare. I said that Parker had shown to have that during his last hospital EEG and he questioned me further. He was skeptical because he said that people get electrical brain activity confused with continuous seizures and he said it is important to determine which one Parker has or had. One can make a huge difference, especially in terms of gaining speech and the other is not a problem.
After a bit of searching through past records, he was convinced that Parker did indeed have continuous night seizures. He reiterated that this condition is extremely rare. He also informed us that as kids get to puberty, if they are experiencing these seizures, they usually grow out of them. He further explained to us that there are ways to possibly stop these seizures. He said that he sees really good results with high dose Valium. Apparently, after Parker has his 24 hour EEG, if the results are positive for continuous seizures during sleep, he will be moved to the ICU to be watched closely, and will be given Valium in high dosages rectally. If all goes well, the next day he will begin taking it orally and if all goes well, he will be released with a prescription to take it over the next month. At that point, he will be tapered off the Valium and generally most patients’ night seizures are gone.
If the Valium doesn’t work or the seizures come back, there are other options to try. It is possible to get back on the Valium at a low dose or he could take steroids or go to the hospital for frequent IV’s of another drug. I think I would allow the steroidal treatment only as a last resort and only if it is necessary. I want Parker to get his speech back more than anything; but, I don’t want to sacrifice his health for the ability to speak. After all, he has just turned 11 and this may all go away in the next couple of years on its own.
I look at this new revelation of information as very good and full of hope for us. Finally, this may be the reason for the speech appearing and disappearing his whole life. I have always been certain that seizures are the culprit, but, I didn’t know specifically how or what we could do or even if there were something to do. When Dr. Nelson told us a couple of years ago that he was having these seizures during sleep, we were told it would affect all learning because during sleep is when what we learned during the day is basically imprinted on our brain. With continuous seizures, our brain doesn’t get the chance to store our knowledge and so we are continually starting over. I can always tell when Parker is having these and when he is not. He is tired a lot, sleep is not good, he doesn’t do real well in school, and he has no speech when they are happening. When they are gone, everything is so much better and speech starts to emerge.
We will just wait and see what the test shows. He is scheduled for June, but, what we find will depend on whether he is in the midst of these seizures or not at the time.