Tuesday, August 30, 2016

What Does Histamine (H3R) Have to do with it?

When October arrives our Ayden Jane turns 9!! Can you believe it? What a wild rollercoaster ride she has taken us on over the years. She entered the world a frail, weak little mystery; too weak to eat, or move, or even respond. I never could have imagined at that time as I sat by her side waiting for her to “wake up”, hidden inside that beautiful, motionless little baby was a determination and strong will like I have never seen.

She has lived a life of hard work, therapies, dietary restrictions, doctor’s appointments, blood draws, shots and much more, but she does it all with no complaints and a smile (most of the time).  She worked to learn to crawl, walk, run, read, write (still working hard on that one), play sports, learn social skills … the list goes on. 

She still has gaps in her ability to operate in a fast paced world. Everything takes more effort for her than for other kids and just getting through the day can be exhausting. Even sleep is a bit off for kids with PWS. Every part of their day and night is affected.

Even as I write this, waiting for supper to come out of the oven, Ayden Jane is napping. Naps had all but disappeared over the summer but with the return of school, she is tired. It takes so much out of her to keep up all day long. If only things could come easier! 

So what if they discovered a receptor in the brain that effected things that lined up almost precisely with the host of symptoms of Prader Willi Syndrome.

I introduce you to the Histamine 3 receptor and the drug that has already been developed and approved for Narcolepsy in Europe – Pitolisant. The link below describes the science for those who enjoy that. 


In Ayden Jane's short lifetime new ideas have made a big change in what is possible for people with Prader Willi Syndrome. I am hopeful that Pitolisant will level the playing field for Ayden Jane and allow her to not just 'keep up' with her peers but do so without giving every ounce of effort she has to give. I am hopeful it will allow Ayden Jane to enjoy the ride more often and even to excel in some areas. I am hopeful this will allow me to see what Ayden Jane would be like without Prader Willi Syndrome.

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