Wednesday, March 22, 2017

The Pattern Continues

Gary picked up Ayden Jane from school and she was tired. Not grumpy or irrational or shutting down tired. My PWS friends will know exactly what I am talking about. She was just, kid who had 2 super busy days back to back tired. She knew she was tired because she told Gary she was too tired to go to swim team. She had a snack and watched a cartoon or two while playing with some old friends, her mini pop beads. It was something she used to love to do when she was little. Sort of a calming thing she did when her little sensory system was overwhelmed. I have not seen her do that in years.

After a bit she began to get a little ornery which is common when she is tired. What was new was that she stopped arguing and just slipped off and went to her room to take a nap. I say that is new because all too often in the past, she will pick and push buttons ... eventually our patience wears thin and we fuss at her. The ensuing events end up with her going to bed crying and not having a clue how it all happened. 

She slept for a pretty long time and then woke up, happy as a clam. She had some supper and then happily completed her homework. There is an ease about her. Gary and I were talking and it as if we see glimpses of what Ayden Jane would be like without PWS. Let's just say she would be a handful in a whole other way!!

I think things are evening out but it will continue to be a process. She feels so good at times she over does it and feels it the next day. She is taking in so much she needs a little help organizing and integrating it all. I am hoping the pattern of super powers / worn out / super powers.... will even out  over time and Ayden Jane. Hopefully in a a way that is super powers at all times!

Tuesday, March 21, 2017

What a Difference a Day Makes

Yesterday compared to today was a big change. If it keeps going at this rate it's going to get wild around here.

Yesterday, Mrs. M said Ayden Jane was a little sluggish. I saw the same at home. Not full on tired, not falling asleep, just processing a little slow and struggling a little. I don't know how else to describe it. She did a lot, school, swim team, shopped, homework, walked dogs... She wanted to do all of it but at the same time you could see the effort in it all. There was some anxiety, which always comes with tired.

Today? I do not know how school went but since I have been with her - starting at 4 ish - she has been on FIRE. She did an awesome job picking out new glasses. She was cracking up the ladies there helping her. She was decisive about what she liked and did not like. She was delightful.

After glasses we joined up with Gary and Mckenna and grabbed a bite to eat. She was so animated. So much laughter. So much joy. All of that and she was on her way to supper so you would think she would be slowing down.

After a burger and veggies we headed home to knock out homework, walk the dogs, wash the dogs and take a shower. There is NO WAY all of those things could possibly have been done in one night before Pitolisant. Not only did she accomplish the list of things she wanted to, she did it all with ease. It is currently 9:00 and she is still firing quickly.  As we were nearly home from our walk Ayden Jane stopped to tie her shoe. Being the good mom I am, I just kept walking and figured she'd catch up and knew her way home anyway. I got down the road a bit and I heard footsteps. They were the footsteps of Ayden Jane running. I didn't even turn around because I loved the sound. It was different. Her steps were quicker and lighter and even and.... sounded like a kid who ran easily. After she caught up she said, "mom, Pitolisant makes me way faster. Hey, can we start running this week? I want to do that bouncy race coming up! I bet I can run the whole way with no problem.... "

I am honestly a little nervous about tomorrow. I think that sometimes, on P, she has felt so great one day that she over does it and the next day she is tired. Or maybe she is sort of over energized that she doesn't sleep well? I don't know, it's just a pattern that has seemed to surface. I am hoping that it will all even out over time. I have a feeling my quick increase is partly to blame. I think Pitolisant needed to really settle in and she needed more time to adjust at each dose. I guess that is part of what we are doing. Looking for benefits and side effects and knowledge for dosing.

What I do know for sure is that today was great. The hope that days like today will string together and become the new normal is amazing. Of course, only time will tell... patience, patience. Prayers of thanksgiving tonight for a great day and a glimpse of what may be to come. Prayers for little Ayden Jane as she walks through this all and rides the ups and downs of all sorts of things going on inside.

Sunday, March 19, 2017

Ahh the Weekend

Weekends are great, of course, but there is even more reason for me to love a weekend these days. I get spend time around Ayden Jane. I see first hand how she is doing. I try to pick out the little nuances of what Pitolisant may or may not be doing for her.

Yesterday we started our day with a dog walk and errands. Dog walks serve a dual purpose as they are obviously exercise, but even more than that they are wide open, one on one, talk time. We usually walk about 45 minutes or so and Ayden Jane talks the entire time. Some days it's boring, making up stuff to talk about rambling. Lots of days its her time to really work through the mysteries of life. She just seems to talk through things better when she is on the move and other distracts like electronic and family fade away.

We headed out and I had in my mind the challenges she has been having expressing all that is going on in that little head of hers. One thing I learned quickly is that she is not short on words! She rattled on and was enjoyable. She is actually really getting into competition. She is following Mckenna's soccer team and tells me who plays where and how they are the best at that position. Some is pretty spot on and some is entirely made up. She is definitely the teams biggest fan though, and has obviously really watched the past couple of games. I have had basketball on a fair amount and she loves it too. She has reasons for the different teams she picks in different games. No, I'm not saying it has anything to do with Pitolisant, it's just fun to chat with her and have her really understand the game.

After the walk we made pizza for her and did a bit of shopping. Finally, we took a bike ride to the library to exchange books. I notice her energy is much more even. Supper time has been pushed back a bit to more like 6:00, which is good because bed time has been pushed back a fair amount. (she used to go to bed shortly after 6)

It is a little comical because she gets bored sometimes with the added energy and hours in the day to fill. She has not had much practice with time to kill and energy to just do something for fun to entertain herself. She had been pushing to get things done in her awake/alert moments because she did not have enough time.

All in all, she is doing great and I am super excited to see how this week goes. I am curious what mrs. m will see at school. I am curious to see how homework goes. I am curious to see how swim team goes. I am curious to see if any weight or body composition changes begin. I am curious to see if the improvements in temperature regulation continue. I am curious to see if she passes her multiplication timed tests haha. Guess we will see...

Thursday, March 16, 2017

Temperature Regulation

For those of you who have followed Ayden Jane over the years, you have come to know that the child has some strange temperature regulation issues. She will run around outside with no coat and no shoes when everyone else is totally bundled. It's a known thing and I'm sure most people think she does not even own a coat (or that her parents are slack)

I distinctly remember when I fought with her and made her wear a coat in the past. We went on a dog walk. It was after dark and I layered up because it was cold. Ayden Jane did not want to wear a coat but I convinced her. We made it down the road a ways and she asked to take it off because she was hot. I didn't believe her at first but sure enough her hands were even warm. I touched her back and she was so warm she was sweating. I listened better after that.

Of course, there were times I was pretty sure she was cold but just wanted to prove her point. All in all though, I would be sure she was cold and then feel her arms. Warm. If she wore long sleeves or long pants to school she would overheat in the classroom.

I think the odd part to me is that she does not particularly overheat in summer. It seems to be more related to clothing than actual temperature.

So, this evening when it was upper 40s, Ayden Jane surprised us all. She just said it's kind of cold out so I'm going to wear pants and a coat. Oh my. Once the shock wore off I just agreed that it was a good idea and didn't make a fuss of it. She was great at the game and ran around with a couple other younger siblings and never once took off her coat or even looked flushed or over heated. When we got home she came in and was playing a game on the ipad. She sat down on the sofa and didn't even take the coast off. Added layers in a warm house....

So, why the change? Well guess what one of the area's regulated, at least in part, by H3r.  Yep. It has to be pitolisant.

Wednesday, March 15, 2017

Smoothing Out

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.

Monday, March 13, 2017

Adjustments

Today was not a good day. Ayden Jane woke up this morning saying she had a headache. I let her stay home and she hung out with Noah and Kayla. When I got home, the looks from Kayla and Noah told me that she not been easy to deal with all day.

A little PWS background is that they often struggle with emotional stability. This can mean a lot of things but in Ayden Jane, it means she can go from happy, smooth sailing to a melted down puddle of mush in about 3 second. Typically, she is this way when she is over tired or I am messing with her supplements. Apparently, she gets this way when adjusting to doses of Pitolisant as well. Good to know.

Basically, she was tolerating, in fact asking, to go up on the Pitolisant each week. I think it was all going well and she had no side effects other than that first couple days of a rough morning. Now pneumonia is gone, the steroids and antibiotics have worn off and she should be getting back to her old self. But there is something going on.

So, she woke up with a headache and couldn't go to school. The other odd thing was this evening when she was cold - inside the house! The child that is never cold. Well, never feels cold. The child that will turn blue and refuse a coat. She chose to put on a coat!! Her skin was chilly to the touch. I know that sounds like a strange thing to say but in the past, she looked cold but her skin was always warm to the touch. It was strange, but actually normal.

She is also having a hard time explaining what she is thinking. I believe she is just thinking faster than her mouth can keep up right now. It has happened in the past. Sort of like she has a complex thought and has made connections but she can't find the words to explain those connections. It is irritating for us and frustrating for her. In the end, I tend to get impatient and she tends to cry. Yeah... it's a lot of fun.

Anyway, I am guessing that our quick rise in dosing was not a great idea. 

Saturday, March 11, 2017

Party Weekend

Ayden Jane is following up her insanely busy week with a birthday party on Saturday and one on Sunday. This girl loves a party.

Today we bumped her Wakix up to 18mg. In theory she should be wide awake and going full steam. In reality, she was tired and went to bed early. This is wear life makes the "control" part of the experiment difficult. I mean, just yesterday was her last day of medication for the pneumonia. She (we) went super hard this week with school, after school activities, make-up work, 2 high school soccer games, out to supper, Noah home on spring break.... I know I'm tired!! I took myself a nice little nap.

I will use a "situation" as an example today of a challenge Ayden Jane has, particularly when she is tired. I told her she had a follow up at the pediatrician on Monday. She asked some questions about why and proceeded to get very upset. What she was saying and her reaction did not match. I gave her a minute to calm down and then pushed the issue. Finally, she said, she didn't want to miss any more school because she is just catching up. I told her we could change the appointment and do it after school and poof. She was back to excited to walk the dogs and get on with our day!

It is so aggravating and I am not sure where the glitch is. It is like she does not want to say the 'real' underlying issue so she makes up something else as a reason for ... oh I don't even know. This sort of talking around issues without giving you the real meat gets frustrating for everyone. I need to write a few down.

I can say for certain that it is something that happens much more often when she is tired. Then again, she would find a reason to argue with a brick wall when she is tired too.

As for the birthday party. I dropped her off. I have no idea what she ate but I trusted her. She was at a party of a boy in her class and most of her class was there. I was happy that it was a between lunch and supper party with popcorn and fruit for snacks. She brought some dark chocolate for cake time. When I got there she was finishing up some fruit and headed out to play on the zipline in the back yard. It was nice because it was one of those moments where you could not pick her out as any different from her peers.

I am looking forward to Pitolisant making those sorts of moments the norm.