I haven't said much about Pitolisant in particular lately. Mostly because the other things that have been going on sort of overshadowed it.
Here is where we are with it. Ayden Jane started a bit over a year ago. We went up fairly quickly, okay very quickly. Approximately every two weeks brought about a dose increase. The increments were in 4.5 milligram amounts until we got to 18. By that time we were close to the end of the school year and decided to let things settle in over the summer. Summer's are easy on pretty much all fronts. Of course, other than the keeping her busy front. She wants non-stop action in the summer. (for details on how all that went you can look back to Feb/March of 2017)
After summer I decided to let Ayden Jane settle into grade 4 on the same dose. Not thinking it was all she needed, but wanting her teacher to get to know her as she was on 18 and help me be able to note improvements if I increased the dose. Well, it started off okay, and I increased and then this year sort of crashed and burned on a number of levels. I have not been able to get good info from school. She got sick in December.
I saw Dr. Miller at the end of January and she was still not well. Dr. Miller gave me the go ahead to bump her dose again. This relieved the need to cut her pills into fourths and allows me to give her a pill and a half, equaling 27 mg. My frustration is that I feel like her brain is better. I think she is processing well and can learn more easily. I believe she is communicating better in general and know she has been way more fun to live with. It's the feel, think and believe stuff. I really want an objective opinion that does not spend as much time with her to be able to help put some parameters on the gains she has made.
Enter her amazing teacher from last year. The one who walked us through those challenging first months and pushed Ayden Jane to new heights last year. Even more importantly, the teacher that Ayden Jane connected with, is able to communicate well with, trusts and loves. The wonderful Mrs. M has agreed to spend a bit of time with Ayden Jane with a two fold purpose.
1) Help Ayden Jane improve/regain her confidence in her academic abilities.
2) Get a feel for how Ayden Jane is processing, comprehending and learning.
I can hardly wait!!