Friday, April 6, 2012

A young boy’s experience with Xyrem and sleepdisorders.com

image

I was recently asked by Nader Ahmadnia, the webmaster for sleepdisorders.com, if I would be willing to have him as a guest blogger on my site.  As the content of the material was interesting, I agreed, and you can find the short article he wrote below.

“Xyrem Helps Narcoleptic UK Boy Live a Normal Life

A story published by the UK press last month had sympathizers smiling about advances in narcolepsy treatment. Reece Williams, a 7-year-old boy with severe narcolepsy symptoms, couldn’t even kick a soccer ball without falling asleep on the spot. A normal day for Reece consisted of 23 hours of slumber and approximately 25 drowsy falls during the hour that he wasn’t completely knocked out. But after taking the drug Xyrem, Reece’s symptoms have improved significantly.

Xyrem, a medication that claims to help daytime sleepiness and cataplexy symptoms in narcoleptic patients, has caused a lot of controversy among researchers who debate its very high cost. The drug also claims to improve quality of sleep. As of now, the drug is technically only licensed for prescription to adult patients. But Reece, who had undergone a multitude of tests and treatment plans prior to being put on Xyrem, now has the ability to enjoy a normal life.

It took almost two years for Reece and his family to receive a proper diagnose of narcolepsy. He had begun displaying symptoms at age 5 and was becoming increasingly irritable and aggressive. He fell behind at school because he kept falling asleep. His mother worried constantly that a fall might result if serious physical injury. But after countless misdiagnoses, including weeks spent in a hospital while Reece was put on high-dose steroids, a simple Internet search of the boy’s symptoms led to identifying Reece’s rare sleep disorder.

Reece’s parents tracked his symptoms by filming the boy. They noticed that whenever he laughed or got excited, his face would twitch and then he’d fall over sleepily. After taking the boy to a sleep center and letting him stay there overnight to be studied, doctors found that it only took Reece 19 seconds to achieve deep stages of sleep normally reached 40 minutes after going to bed.

Sleep doctors tried other sleep medications before turning to Xyrem, but nothing had worked. Now, Xyrem puts Reece on a 12-hour sleep cycle, and he remains more awake during the day. He still needs plenty of naps—crucial for any patient suffering from chronic daytime sleepiness—but overall, Reece’s parents and doctors are happy with Xyrem’s results. They’ve noticed a better sleep schedule and better quality of sleep, in general, presumably with fewer nightmares and less stress. If this treatment plan continues, Reece is going to grow up adhering to a strict schedule of three doses every night, but at least he will be able to wake up the next morning and kick a soccer ball around with his dad.

Sleepdisorders.com is designed to link sleep disorder sufferers to local sleep doctors and sleep study centers. In addition to our directory of sleep doctors, you can find informational articles related to your unique sleep disorder.”

I was surprised to read this story, as I had never heard of someone taking 3 doses of Xyrem, but apparently it is possible!

Thank you to Nader for the story.  (I myself do not have any affiliation with any sleep website.)

I also wanted to say a few words about sleepdisorders.com, as I checked out the site myself to see what it offered.  Two things on there site sparked my interest.  First, they have a free service where you enter your sleep disorder(s), where you live, and a little about yourself and they will recommend a sleep treatment center for you.   They also have a free service where you can ask a sleep professional a question online and they will send the answer back to you. 

Although I haven’t personally used either of these services myself, they looked like they might be helpful to some of my fellow Narcoleptics.  Let me know how it goes if any of you try out these services!

I hope that everyone is enjoying the spring, and I wish you all a Good Friday and an early Happy Easter!

image

(Easter egg trees like this are a classic German tradition.  So that’s your taste of Germany for the day!)

1 comment:

  1. I take 3 doses too. that's not so uncommon as you thought afterall :p

    ReplyDelete