So last I wrote was 5 days ago. It has been a busy few days.
Friday was quite the test for Pitolisant. Ayden Jane had a full day of school, swim team practice, then we ran home to pack up and head to Columbia. I figured she would take a good nap in the car before the 8:30 soccer game of Mckenna's we were heading to. I figured wrong. She played her ipad, read her box car kids book and generally entertained herself the entire trip.
Now I thought I was in for a rough night at the game. I mean, Friday night - game starting at 8:30? How could it end well. Again I was totally wrong. Ayden Jane played her little heart out and ran around all the way 'til 10:00 pm when the game ended! It is such a new world we live in.
So Saturday brought 2 more soccer games and the trip home. She did well. A little tired and cranky, but so was I. Mckenna played awesome and the second half of the second game, Ayden Jane was tired of running around and it was getting hot. She came and sat with me and totally got into the game. It was great. So basically, 3 soccer games in less than 20 hours and all was well.
Sunday I thought Ayden Jane would be tired but she woke up full steam ahead. We went to church, then hit the beach for a while. She had a wonderful time riding on and playing in the waves. There is something so calming to her about being knocked around in the ocean. Next up was Awana - a kids program at church - and lastly we took the dogs for a walk.
She was up and ready for school with no problem this morning. It's awesome.
Nitty gritty wise, this is where we are. Ayden Jane is currently on a dose of 13.5 mg of Pitolisant. I am planning to maintain this dose for another week at least. At the same time, we started her increase in gh that labs showed back in early February she is due for. The other thing I am working on is reducing the amount of Acetyl Carnitine (ACL) I am giving her.
ACL is brain activating. It was very helpful in the past with keeping AJ alert in school. It is a nutritional supplement and not a drug, but is one that dosing can be tricky. For Ayden Jane, too little and I could not keep her carnitine levels decent and Ayden Jane had trouble focusing on things. The tiniest bit too much and AJ was anxious and ornery and none of us had any fun. I was wiling to put up with a little panicky kiddo if it meant she could focus, but there was a line.
With all that seems to be going on in Ayden Jane I am cutting back the ACL in half (after having checked with Dr. M, of course) Whew. Lots of tweaks and adjustments. Ayden Jane is handling it all like a pro.
Friday was quite the test for Pitolisant. Ayden Jane had a full day of school, swim team practice, then we ran home to pack up and head to Columbia. I figured she would take a good nap in the car before the 8:30 soccer game of Mckenna's we were heading to. I figured wrong. She played her ipad, read her box car kids book and generally entertained herself the entire trip.
Now I thought I was in for a rough night at the game. I mean, Friday night - game starting at 8:30? How could it end well. Again I was totally wrong. Ayden Jane played her little heart out and ran around all the way 'til 10:00 pm when the game ended! It is such a new world we live in.
So Saturday brought 2 more soccer games and the trip home. She did well. A little tired and cranky, but so was I. Mckenna played awesome and the second half of the second game, Ayden Jane was tired of running around and it was getting hot. She came and sat with me and totally got into the game. It was great. So basically, 3 soccer games in less than 20 hours and all was well.
Sunday I thought Ayden Jane would be tired but she woke up full steam ahead. We went to church, then hit the beach for a while. She had a wonderful time riding on and playing in the waves. There is something so calming to her about being knocked around in the ocean. Next up was Awana - a kids program at church - and lastly we took the dogs for a walk.
She was up and ready for school with no problem this morning. It's awesome.
Nitty gritty wise, this is where we are. Ayden Jane is currently on a dose of 13.5 mg of Pitolisant. I am planning to maintain this dose for another week at least. At the same time, we started her increase in gh that labs showed back in early February she is due for. The other thing I am working on is reducing the amount of Acetyl Carnitine (ACL) I am giving her.
ACL is brain activating. It was very helpful in the past with keeping AJ alert in school. It is a nutritional supplement and not a drug, but is one that dosing can be tricky. For Ayden Jane, too little and I could not keep her carnitine levels decent and Ayden Jane had trouble focusing on things. The tiniest bit too much and AJ was anxious and ornery and none of us had any fun. I was wiling to put up with a little panicky kiddo if it meant she could focus, but there was a line.
With all that seems to be going on in Ayden Jane I am cutting back the ACL in half (after having checked with Dr. M, of course) Whew. Lots of tweaks and adjustments. Ayden Jane is handling it all like a pro.
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