Wednesday, February 15, 2017

Here We Go

Whew!! It made it. So tomorrow we will begin our grand adventure. The 'likely' target for dosing in 18 mg per day. To start, we will work with 4.5 mg tablets, taking one per day for a week or so then going to 2 per day and so on. (obviously, 4 per day is 18 mg) Once she is at a dose of 18 she can switch to the 18 mg pill.

So... what exactly am I hoping to see from Pitolisant? First of all, more wakeful and productive hours in her day. Currently, Ayden Jane has spurts where she does great but then she gets a bit knocked of schedule and ends up falling asleep in the afternoons and cannot recover the rest of the evening. Or, she just crashes, announcing her brain is done working and goes to bed by 6-6:30. Either way it's just not enough hours in the day for a 9 year old to do all the things she has to do!

Additionally, I am hoping that it will improve her processing speed. Basically, when all things are at a perfect balance, we get to see just how smart Ayden Jane is and enjoy her quick wit and caring personality. Trouble is, this balance is so very, very tenuous. The hope is that with Pitolisant, she will be able to operate in her sweet spot all day every day!! Wouldn't that be fantastic!

We have gathered some baseline data from school, and cognitive testing and even OT. At the end of the school year we will compare January data to May and then we should have good data to back up whether or not there have been significant improvement.

So, like I said, tomorrow is day 1. Her teacher will not be there which makes me a little nervous because she is awesome and knows Ayden Jane so well that it's like being there myself. Truthfully though, I am guessing that day 1 at a low dose will be slightly anti-climactic. If there are positives it should show up in the evening since that is when AJ struggles the most anyway. And tomorrow will be a very long day for her with school, after school club and a soccer scrimmage of Mckenna's where she will run around until fairly late. (8:30)

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