Monday, November 19, 2018


So before we ever went to see Dr. Miller I started to notice Ayden Jane was losing weight and looking scrawny across her shoulders. In the past this was a sign her gh was low. She was also starting to get tired earlier in the evening.

I talked through it with Ayden Jane, trying to figure out what she was feeling and she honestly amazed me. We talked about things that could be causing her reduced energy feeling. She described it as a physical tired, not a brain tired. She felt that it was not Pitolisant related because it felt different. She was excited to get lab work done to see if maybe it was gh. I was a little concerned about how labs would go in terms of gh because she was a little sick the week before and that always messes up the gh level. Sure enough, her IGF- 1 was a fair amount higher than it was 6 months ago and raising gh was off the table even though her dose has not been increased in a year and a half.

So now what? After a chat with Dr. Miller she told me I had room to play with Ayden Jane's carnitine supplements so play I did. I made some pretty risky moves and we all paid for it. Oops. Here's the scoop. Ayden Jane requires significant amounts of carnitine and always has. Over years of experience I have learned that Carnitine Fumarate provides physical energy and a dash of Acetyl carnitine seems to really improve brain energy and speed and over all 'enhance' the carnitine usage. I stopped the ACL with each Pitolisant dose increase and then slid it back in, with the exception of this last increase. ACL is apparently a natural remedy for narcolepsy so it all makes some scientific sense. (sorry, I am being tough to follow)

I decided to add back in both CF and ACL  The result was Ayden Jane's little brain was in over drive. Her poor teacher had her hands full with Ayden Jane partnered with a boy she was sweet and kind to the week before and had ZERO patience with the early part of this week. It was not pretty and none of us liked Ayden Jane on this dose. ha. I decided to ditch the ACL for now and keep the added CF and see how this rolled. It was so much better. Sweet, focused, happy Ayden Jane came back to us.

I also noted with the increased carntine that she is not hungry. As in, leaving food on the plate and saying she isn't hungry and doesn't want any more. Time will show if she increases the muscle mass back in and if I see the return of her physical endurance at swim team. Hoping for the best!

And, because I always mess way too much, I will likely try a small amount of ACL eventually.