Last post was 2 days ago and things were not pretty. Glad to be able to say that today was a great day.
There was improvement yesterday, but Ayden Jane was still a little on edge. Sort of like, she was okay but we had to tread lightly to keep things that way. She did okay at school but had a small meltdown that she was able to pull back together. There was not a lot of laughter. We could not tease her as she would get upset. She was just not fun.
I talked through things with Gary. We discussed the rising dose, how it seemed to correlate with what we were seeing, that it would likely work it's way out but ... how long? In the end, he was the voice of reason and reminded me it was not a race. That just because I had a target goal in my head did not even make the target correct. We decided to go back to 13.5 mg and see how things settled in. I knew it was the right choice but for some reason my crazy brain only wants to push forward.
So how did it go? She had a great day at school. She did awesome at swim team. She was funny and quick minded. She laughed. She laughed a lot.
We will stick with this dose for a while - or until I get impatient, or until Ayden Jane asks to go up, or until I learn something that says otherwise.
All I know for sure is that today was a good day. Once we get to string together a bunch of good days, maybe I can begin to piece together what sorts of things Pitolisant is helping. Hopefully, then I can piece together how or why these things are improving and how they are connected with Pitolisant.
The question of dosing is the hardest. Not that I am scared we are hurting her at any particular dose. We have that piece covered. Just that there are not many who have tried the drug and even fewer who have PWS and are trying the drug. I'm talking single digits. So optimising dose to gain the benefits we are looking for but with no negatives. There just aren't guidelines yet... much of it is determined by what we see in Ayden Jane and what she reports to us.
It's all and adventure.
There was improvement yesterday, but Ayden Jane was still a little on edge. Sort of like, she was okay but we had to tread lightly to keep things that way. She did okay at school but had a small meltdown that she was able to pull back together. There was not a lot of laughter. We could not tease her as she would get upset. She was just not fun.
I talked through things with Gary. We discussed the rising dose, how it seemed to correlate with what we were seeing, that it would likely work it's way out but ... how long? In the end, he was the voice of reason and reminded me it was not a race. That just because I had a target goal in my head did not even make the target correct. We decided to go back to 13.5 mg and see how things settled in. I knew it was the right choice but for some reason my crazy brain only wants to push forward.
So how did it go? She had a great day at school. She did awesome at swim team. She was funny and quick minded. She laughed. She laughed a lot.
We will stick with this dose for a while - or until I get impatient, or until Ayden Jane asks to go up, or until I learn something that says otherwise.
All I know for sure is that today was a good day. Once we get to string together a bunch of good days, maybe I can begin to piece together what sorts of things Pitolisant is helping. Hopefully, then I can piece together how or why these things are improving and how they are connected with Pitolisant.
The question of dosing is the hardest. Not that I am scared we are hurting her at any particular dose. We have that piece covered. Just that there are not many who have tried the drug and even fewer who have PWS and are trying the drug. I'm talking single digits. So optimising dose to gain the benefits we are looking for but with no negatives. There just aren't guidelines yet... much of it is determined by what we see in Ayden Jane and what she reports to us.
It's all and adventure.
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