Monday, March 6, 2017

Back on Track (hopefully)

Ayden Jane made it through the entire school day today. Typically, that is not anything all that exciting, but just a week ago we were sitting in the ER while she gulped for air. What a difference a week makes.

Starting on Saturday morning, Ayden Jane upped her dose of Pitolisant to 13.5mg (3 pills) per day. When we started this whole thing with Pitolisant, I was expecting to be able to observe each little increase over time. To sort out what benefits she was receiving and watch for any side effects. Ayden Jane getting sick has made much of that impossible, but I can give my opinion on what pitolisant is doing in spite of the illness.

First of all, in the past when Ayden Jane has gotten sick she has been quite slow to recover. It would take her weeks to stop napping and return to her normal energy level. Not this time. This time I would say her recovery is pretty remarkable. I mean, she made it through the full day of school, started the Girls on the Run program and did all her homework staying up until after 8:00.  So just recovery from illness, my gut says is improved by Pitolisant.

Noah is here for his spring break. I know that has nothing to do with Pitolisant, but he has noticed a significant improvement in her energy. He was amazed that she did not go to bed before 8. It reminds me that she was pretty much crashing by 6-6:30 every night. It made a big impact on our whole family. It effected dinner time, having to squeeze everything in before 6 because once the tiredness overcame her there was just nothing to do but put her to bed. We had to give up soccer because practice was 5:30 to 7 and she would fall asleep in the car on the way there and then could not pull it together and even participate. Now we have gained 2 productive hours in a day!

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