Saturday, October 14, 2017

Small Bump, Big Jump

After talking with Dr. Miller, we decided to increase Ayden Jane's dose of Pitolisant by another 4.5 mg. This takes her from the dose of 18 she was on to 22.5. 

Why? you ask? Some of the sleepiness creeping in after school. A bit of over emotional, overtired stuff. Notes from her teacher that her processing speed is noticably slower later in the day. And Ayden Jane asking for it. She gave a fair account. She just told me that she can do all she wants but doesn't want to feel tired and have to work so hard. She was really sweet honestly, telling me to check with Dr. Miller and if she couldn't it was okay. She would manage.

Dosing is a bit of a challege because Pitolisant is new. She is young. We want to ere on the side of caution if there is any chance of error. It is EXPENSIVE. Dr Miller decided with us there was no issue going up another bump and that we will hold there for a while - like until we see her in January.

I'm not sure what I expected. I do know I did not expect the bump to make a huge difference, sort of just give her a boost to get through the day with more even energy. What it did do for her was so much fun! She is loud and silly and happy after school. She NEVER stops talking. There is little aruing and much laugther. 

She PLAYED soccer in her game today. I mean, she kicked the ball. Got in the mix. Ran up and down the field. No stand and stare. No getting tired. 

Needless to say I love it.

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