Then it came time to consider transplant for him and flying was inevitably going to be a part of it. So we just accepted it. Then a few weeks ago Al became really concerned about it again after noticing how Max reacted to elevator rides. While on the elevator he would clench all of his muscles and go really hard and turn bright red and not breathe. It's a really strange reaction and Al was concerned because it would last the duration of the elevator ride. He also sometimes would do it just when we picked him up out of bed. We started imagining that happening the whole take off time and got most concerned. So a series of phone conversations later and we decided we needed to work out whether he was seizing or just panicking. If he was panicking, he could try and sedate or calm him. But, if he was seizing, sedating him could actually make matters worse. So we needed to know.
We have no evidence that Max has ever had a seizure. I felt like I may have seen one once. But in terms of true data, it seems that Max does not have seizures. Which is amazing. Because when the neurologists looked at the scans of his brain, they felt that he 'should' be having seizures given the extent of his damage. And we have definitely tried to find him having one. He has had between 5-10 EEGs, including one that went for 36 hours straight. An EEG involves being hooked up to electrodes and having your brain waves measured. If you have a seizure, it causes the brain waves to alter and it can be seen on the EEG. Max has had all normal EEGs.
Max getting a 36 hour EEG in February
But we have only done them in hospital room settings. The idea for Monday's study was to actually do an EEG in an elevator and try and capture his reaction. Amazingly the logistics of that did actually get pulled together and Max did get to have a video recorded EEG in an elevator. He had to go up and down the elevator many times and Al was really encouraged to see that his reactions became less dramatic as the went up and down more times. This made us feel he must be stressing or panicking and not seizing. It also encouraged us that even if the plane frightens him at first, that he will get over it.
And we got the EEG results back and there were no seizures during the ride and he maintained his heart rate which was also important. This is great news! We are so thankful that Max is not having seizures. We have been given the advice to give him Benadryl and hope we knock him out. It seems that it is an exaggerated startle reflex or panic. This is a fairly common characteristic of children with neurological issues that they will panic more easily and more severely. Hopefully if he is a bit drowsier, he will be less frightened and less likely to hold his breath and go stiff.
While we are definitely feeling better about his safety, we would really appreciate prayers for Sunday. We hate to think that he could be really scared and panicking for a long time so please pray he can sleep through the flight and arrive safely and happily in California without any drama!