Pitolisant 22.5

I still like the new dose. I don't see negatives. I have noticed some itchiness. She has been mischevious. She has been content. She is doing great socially. That tiny increase in processing speed and energy seem to have her rolling right along.

Here is our weekend in a nut shell. Friday night was a swim meet where she earned her very first blue ribbon. Saturday morning she had a soccer game and played really well. (relatively speaking) A couple parents commented on the improvement in her.

During the afternoon we rode down and met family including twin boys with PWS. Ayden Jane was super excited and, as typical, was pretty quiet when she actually met them.

Saturday evening it was off to Mckenna's soccer game. It was at a field with a playground with woods behind. Ayden Jane played from 4:30 until at least 6:30 and never even came over to talk to me. Actually, I lost her for a little while. She was on the playground with several other children... and then she wasn't. Eventually she popped out from the edge of the woods. Apparently, they built a butterfly hospital and were having a wonderful time. She was entirely fithy and entirely happy.

Sunday came church and the Fall Y'all festival with lots to games and fun. We threw in an hour long dog walk between the two. All makes for a perfect weekend for Ayden Jane.

Today was strange though. Ayden Jane had a slow start and when she got to school, ended up throwing up. Yep. First time in 10 years! She did not seem any worse for the wear. I talked to her on the phone and she seemed fine. I came to pick her up - I mean, she threw up so I figured I should. She was out on the playground at the time and the moment I saw her I knew she was fine. She came home and read and worked on some online math. I took her to swimming and we went on with our day.

Never a dull moment.

Small Bump, Big Jump

After talking with Dr. Miller, we decided to increase Ayden Jane's dose of Pitolisant by another 4.5 mg. This takes her from the dose of 18 she was on to 22.5. 

Why? you ask? Some of the sleepiness creeping in after school. A bit of over emotional, overtired stuff. Notes from her teacher that her processing speed is noticably slower later in the day. And Ayden Jane asking for it. She gave a fair account. She just told me that she can do all she wants but doesn't want to feel tired and have to work so hard. She was really sweet honestly, telling me to check with Dr. Miller and if she couldn't it was okay. She would manage.

Dosing is a bit of a challege because Pitolisant is new. She is young. We want to ere on the side of caution if there is any chance of error. It is EXPENSIVE. Dr Miller decided with us there was no issue going up another bump and that we will hold there for a while - like until we see her in January.

I'm not sure what I expected. I do know I did not expect the bump to make a huge difference, sort of just give her a boost to get through the day with more even energy. What it did do for her was so much fun! She is loud and silly and happy after school. She NEVER stops talking. There is little aruing and much laugther. 

She PLAYED soccer in her game today. I mean, she kicked the ball. Got in the mix. Ran up and down the field. No stand and stare. No getting tired. 

Needless to say I love it.

First of Many to Catch Up

I am so behind, which is a result of an out of control schedule! For my part, I am not keeping up with life well. My last post was a couple of weeks ago and the days have marched on by.

A couple weeks ago we had soccer in Columbia Sunday, then went to Greenville Thursday and Friday to see Shriner's for a scoliosis check and, of course, to visit Ellie. First up, the scoliosis check went well. I hoped for a reduction in the curve, but no such luck. They said that the curve has remained stable and seemed very pleased with that. I'm not super thrilled that she has even the 13 degree curve but if they docs are not worried I guess I shouldn't be concerned about it. For now we just continue to watch it. Back for another check in 6 months.

Hanging with Ellie was great. Her school was so kind to put on a carnival for us to enjoy together. Honestly, Ayden Jane really enjoyed seeing Ellie's school and doing all the rides and games with her. So fun to watch their friendship

We more or less recovered from all that fun and we were back on the road to Columbia for a soccer tournament for Mckenna. Mckenna played 4 games in under 30 hours... she was exhausted. Ayden Jane ran with the pack of younger siblings, enjoyed time at the hotel pool with a friend and just generally kept occupied and happy. We were all EXHAUSTED after the weekend but, of course, had to jump right back into the swing Monday morning.

It all caught up on AJ during the week and she had a rough one. I think the travel and eating out caused her gut to mess up which always seems to cause her behavior to mess up. Anyway, by the end of the week she seemed pretty good.

So that catches everything up until yesterday. We had Ayden Jane's game at 9 (which was less than her best performance) and then just stayed HOME for the rest of the day. It was wonderful. Then today it was back on the soccer road for the day. The games are fun and AJ does great but this momma is tired.