Wednesday, November 3, 2010

Trial and Error

Since my last post about not sleeping, little did I know that was the beginning of a new phase for Miss HayJoy! She has not slept through the night without waking once between 12am and 2:30 and then again between 4am and 5am! OUCH!!! Still working on the "grump" thing with me. I Sloooooowly getting better with it.
We just recently began working with a peds neurologist Dr. Burdo-Hartman, who has trialed catapres to help Hayleigh sleep and that only seem to encourage to sleep more during the day and did nothing for night time sleep at ALL! We feel it made it worse. NOW, beginning tomorrow we are going to trial a beta blocker therapy (acebutolol) daily starting tomorrow (11/4/10). We give a dose in the am and wait to see if it helps calm the mood and encourages sleep. From the study done of 9 kids (yeah u read that right only NINE kids; just shows u how few of us families there are and how under studied this syndrome is.) it proved to help reduce the amount of melatonin (the stuff that keeps u asleep) produced during the day hoping to have more available for night time sleep. We shall see! Please pray for us and many other SMS families around the world that they will find something that works for sleep. I can honestly and truly say I do not wish lack of sleep upon anyone including my worst enemy.(which is proving to be myself right now cuz I don't sleep) I hate me without sleep!

Until next time...