Friday, February 3, 2017

All In

We have spent the past couple weeks slipping down to Florida to see Dr. Miller, heading off to Greenville to check on her scoliosis and getting labs drawn. It is tiring, and not all the news was good but Ayden Jane is a trooper.

When we saw Dr. Miller she was happy with how Ayden Jane is doing. No surprise. She did get to see AJ while she was a little off. The crazy eye was doing it's thing. Always a sign she is a step off. She was quiet and that delay in conversation was working. Travel with no exercise in bad weather and lots of waiting around is never a good thing.

The biggest issue I wanted to discuss with Dr. Miller is how tired Ayden Jane has been getting lately. It is painful to watch her day go by so quickly. Her day has been cut short by an ever advancing bed time. She is just absolutely done by 6:30 most nights, well, unless she takes a nap after school. There are just not enough hours in her day. She is at an age where this is common in PWS and referred to as daytime sleepiness and is connected to a sleep/wake cycle that does not really work properly. There are a few medications that have helped many families but the side effects make me nervous. So, we decided to apply for a new medication that is only available in Europe. This link explains what we are doing. Pitolisant/Wakix

Hopefully I will lots of exciting things to post in a few weeks when Ayden Jane starts it.

Next we went to Shriner's to check on her scoliosis. Dr. Miller had seen a curve beginning again and that was confirmed by x-ray. Currently her curve is 12 degrees. That is an increase from our last visit and concerning as she is getting ready to head through a large growth spurt. We will be hitting the Physical Therapy hard again. I am thankful swim team will be back in full swing next week and I am hoping the schedule will work out that Ayden Jane can participate in Girls on the Run this spring.

Her tone is not great at the moment but that is often the case in February... Time to start getting active again. I am hopeful with Pitolisant Ayden Jane will gain added quality hours in her day which will give her the ability to get back to regular activity and beyond.

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