Well, now, you didn’t think I was going to make it any easier for you to get the answer to that question than it was for me did you?
I’ll keep it somewhat brief.
Daniel was admitted to the EMU by a smiling Nurse Jen on Thursday afternoon and was connected to the EEG leads by his buddy Dennis within a couple of hours. We had a robotic discussion with Dr. Gupta a bit later, outlining the objectives for the admission, and headed into our first night.
I watched the EEG monitor as Daniel went off to sleep. I am a novice, of course, but it looked quite a lot smoother to me during the sleep transition than it did a month ago when we were at Cleveland Clinic the first time, so I was eager to hear what Dr. Gupta would have to say Friday morning. His report was very encouraging. There has been a 25% reduction in the ESES (epileptic spikes during sleep) as a result of Daniel being on the steroid. Dr. Gupta wanted to get data over a few nights to see if this change was consistent, and to provide the opportunity to possibly capture some seizures. Again Daniel had no seizure activity during the time he was being monitored.
On Saturday we were able to ask Dr. Gupta questions about what to expect now that we know the steroid is helping. He told us that the degree of improvement is extremely individual. Some kids get no benefit; very rarely complete resolution of ESES happens with steroid treatment; some kids get 25% improvement and no more; some kids get 80% improvement. Most kids get between 25-50% improvement. There’s no way to know what Daniel is likely to experience. He did tell us that he has been on this high dose as long as is best and tomorrow we are to begin a slow decrease in the amount we are giving him which should lead to coming completely off the steroid on June 9th. In the meantime we will be increasing the seizure medicine he is on to try to get a good balance of seizure control from the two medication sources.
Of course we are really happy about the reduction in ESES for Daniel and we hope that during the next couple of months the reduction will continue. We definitely need to try to keep our perspective on the long view because more weeks of steroids is not at all a joyful prospect. Daniel is really difficult to deal with right now and I admit to some fear about getting through these next couple of months when we are home all the time and trying to homeschool the kids and work and manage their outbursts and meltdowns. One interesting thing was how well Daniel slept in the hospital. It was amazing! I’m not sure if it was because he felt safe and I was there in the room or if he has made some progress in this regard or what. I guess we will find out as we get settled back in at home. One thing is for sure – my lack of consistent sleep is completely unsustainable. We need a better schedule/plan, but implementing that when I have to go back to bed in the morning after having been up with Daniel in the night just hasn’t worked so far. Both kids do so much better with structure and structure is much more easily implemented when the parents are rested. We had planned for Dave and I to get away for a weekend at the end of March and I had plans to spend next weekend in the mountains with a friend, but both of these trips were canceled due to CoVid-19, stupid virus. This was really discouraging. Instead of rest, more is required of us than ever before in an already depleted state. I know we are not alone. This is a very weird time in our country and so many families with young kids are all collectively going bananas.
I guess that’s enough for now. We were discharged this afternoon around 2 and are driving back to South Carolina. I am not sure we are going to make it all the way tonight – it is already 7 pm and we have over 300 miles to go. How to find a CoVid free hotel … hmmm.