I wrote a quick update last night, but I wanted to elaborate a little more about how our last week and a half have gone.
Last Monday (11 days ago) Maddie was due to begin her week of steroids again. We were very afraid to do them because it was at the start of a steroid week that her seizure-like episodes first began, and we were worried they would get worse with the steroids. At first they seemed to get worse, but then they started to actually get better, and by the weekend, they were almost gone altogether. On Monday, she actually had not a single episode until bedtime. That was the best day since December 29th when these started. And the really cool thing was that all day, while she wasn’t having them, she was essentially back to normal, playful, full of energy, coordinated, and very verbal. It was the first time in weeks that I have seen our Maddie be herself for longer than a few minutes at a time.
So that was really exciting because we thought maybe the seizure meds were starting to work. But by Tuesday, the episodes were back 4 times that day. And yesterday, they were there again too. But the important thing about that is that it seems that the steroids helped control the episodes, and that would only make sense if they are seizures. The neurologist yesterday felt strongly that if the steroids could control them that would mean it is seizure activity. So while we normally hate our steroid weeks, right now, at least we can savor them as they seem to keep the seizures at bay. Of course she is still crazy, emotional, and super hungry during them, but we will happily take that to get rid of the seizures for a few days.
So as I said in last night’s post, the doctor wanted to try another seizure medicine for her, so we hope to get that started today, but it will be probably a week before we can tell if it is working. Then we can begin to wean off the med she is currently on. The doctors at UNC were fabulous, and we will wait to hear from them once they interpret the Video EEG she had here. They suggested that if we have to have another one done, we could sedate Maddie for the hooking up process since it was so traumatic last time. So that was another positive thing.
Basically, where we stand now is that we have much more hope that they in fact are seizures and that we may be able to treat them. We also know that she is not getting worse, which was what our doctors feared so greatly when they told us it could be better to relapse than to have brain damage. At that time it seemed to be causing her to deteriorate quickly, but we have seen the deterioration stop on the seizure meds, even though the episodes themselves have not stopped. The most positive thing is that we got to see our old Maddie this Monday. So we know she is in there, but these episodes seem to make it hard for her to be herself all the time.
Maddie was a trooper yesterday. We had snow in Charlotte and it took us 45 minutes just to get to 485 (which usually takes us 5 minutes). So our trip to Chapel Hill was longer than intended. She had an episode in the car which is really tough, because she just wants to be held during them. We then spent 4 hours at the hospital in Chapel Hill and she was just great. It is sad that she is so comfortable in hopsitals but that is just a fact of our life!
My mom went with me to help out and Brandon drove four hours from Quantico just for the appointment, so it was fun for her to get to see him too. We loved the head neurologist there. He was great with Maddie and it was clear that they were willing to do everything possible to try to find out what is going on. They also want us to go in for a sleep study to see what is going on while she is sleeping, in case that is part of the problem. She has had sleep issues during this whole ordeal and the sleep/wake cycle may have something to do with the timing of when the episodes come on. On another positive note, somehow this week of steroids resulted in her sleeping through the night again. We have no idea how that happened, but it was most likely due to the fact that it stopped the episodes for a little bit. So we have had 4 good nights of sleep in a row, and that has done wonders for both of us.
So while we still have no concrete answers, we are hopeful they are seizures, and we are moving forward with treating them as though they are. Things have been improving for a few days, so we hope for that to continue.
All of your prayers and positive comments mean the world to us. Thanks so much!
Love to everyone,
Liz, Brandon, and Maddie
