She slept only for very brief periods between 1130 pm and 330 am. Every time there was a loud notice, someone came into the room, or sometimes for no reason, she would bolt upright in bed and cry out. Her eyes were wide and frantic. Obviously a very disturbing experience for her, but also very scary for Masud and me too.
Thankfully this morning they came in and took off the leads around 11:30 am. After reviewing all of the tape and the periods I had marked using my " she's doing something weird" button, the neurologist said that she does not have seizures or epilepsy. He said based on what he saw, even though she was presenting clinically with symptom that looked like seizures, her brain function is very high and looks great. He said there's nothing on the EEG that would indicate there is anything going on in Lyla's brain.
That said, since we still don't know for sure why she's having such extreme high and low periods, they're going to continue to take a broad approach to ruling things out. First, they drew some labs for strep and micro plasm, both of which are usually no big deal but that cause the symptoms Lyla is having if they progress. Second, they talked with a pediatric neuro psychiatrist who suggested Lyla get a very small dose of risperdal, a schizophrenia medication that will hopefully help her stay calm during her low periods. She does not have schizophrenia, but her paranoia, anxiety and fear are similar so they feel that giving her a couple very small doses over the next couple days will help her endure the delirium more easily. I made it very clear that these drugs will not be an acceptable long term solution for Lyla.
Third up is another MRI. Despite her just having one on the 6th, they want to make sure there is nothing happening in her cerebellum or brain stem that might be causing the changes we've seen. Again, neurology said he feels it is unlikely we will see anything different than what we saw 10 days ago, but that if we don't check and we miss something, it would be doing Lyla a disservice. They will reassess Lyla tomorrow and if they feel she has improved drastically since today, they may forego the MRI all together.
Assuming n all of that stuff comes back normal, they are thinking Lyla's delirium was most likely caused by a few large doses of steroids he got just before she left the Picu. Despite the fact that she has been on steroids for far longer periods of time in the past, apparently large doses given close together can cause the brain to get a little fuzzy until the steroids are out of the system. I still feel like that's a pretty squishy explanation of why this has happened, but since Lyla seems to be getting better each day, I guess what's most important is her recovery.
We had several visitors today and Lyla was well enough to take wagon rides around the hospital. When she's not in a low place, she's very talkative and even a little squirrelly if you get her riled up. Stacy got the talkative Lyla while Camilia saw the scared Lyla and Beth and Trisha and th skids got a quiet but slightly interactive Lyla. Thanks for the care packages, gifts and dinner ladies!
Lyla was very tired tonight, but I think she still had good time seeing some of her school friends. At first she was just sitting in the wagon, but after everyone else was sitting at the table oing puzzles, she got in on the action too. She was quiet and non-verbal, but still played. It is the most I have seen her interact during a low period. We're so grateful for our "family connections" friends. I am so grateful to have these people in our lives. I have long been grateful that we have such a great class and friends, but nights like tonight make me feel like we've become our own little family of families. As soon as we got back upstairs, Lyla looked at a book Beth brought and was suddenly talking.
As you can imagine, I was quite tired after last night's EEG. Thanks to my totally awesome parents for everything you do to keep Masud, Lyla, and Me comfortable and well tended. It was great to take a nap knowing Lyla was in such loving hands buying whatever she wanted at the gift shop. :)
We're probably in for several more days in the hospital. I don't want to leave until we understand what's happening with her mental health and I also want to make sure she's feeling strong enough to walk, feed herself and make it through the day as independently as possible. Lyla's finally having some good, restful sleep. Hopefully she'll sleep through the night and be even closer to her baseline self tomorrow.
I am lucky to have such an amazing kid. I know everyone thinks their kids are amazing, but mine is truly a little hero. I don't know what I did to get such an awesome daughter, but I couldn't ask for a more beautiful, brave, strong and funny girl. I love this kiddo, and I am blessed to her her mom.
Pics: settling down for a little "homework", some of our family connections family, care package lovingly decorated by Brooke, Lyla's new friend from the gift shop.
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