Sleep Study Results

We have been so busy since we got the results last week that I haven't been able to update anyone really. It was too much to post in a quick paragraph on Facebook and a blog just didn't fit our schedule. But it's 5 am and I have been for an hour already so now is the perfect time! :)

We met with Maelee's sleep doctor last Thursday (2/7/13) morning to go over the results of the sleep study she had done the week before. We were not surprised by the results of it but disheartened by what would come next. Maelee has PLMD (Periodic Limb Movement Disorder), RLS (Restless Leg Syndrome), and Insomnia. PLMD and RLS are things she will always have but we are hoping the insomnia is something she will either grow out of or we will learn to cope with somehow through sensory regulation.

I know many people get RLS when they are pregnant or suffer from it as an adult and take sleep medicine to help them fall asleep but mixed with PLMD we can't just give her melatonin and hope she drifts asleep. PLMD arouses her in her sleep but doesn't wake her......she hardly gets deep sleep! The whole night she did the sleep study she only hit REM sleep (deepest state of sleep) 3 times and for a very short amount of time. It makes me sad to think all this time she has just been so exhausted.

Here is a brief description of PLMD from the website sleepdisorderhelp.com:

"Periodic Limb Movement Disorder (PLMD) is characterized by the periodic (every 20-40 seconds) and sustained (0.5-4.0 seconds in duration) contractions of one or both front leg muscles often causing unperceived arousals or awakenings from light or deep sleep. These contractions result in repetitive jerks for about 2 seconds of the toes, feet, legs, arms, and/or thighs, which often occur in stages 1 and 2 of NREM sleep and disrupt the quality of sleep."

So ultimately her RLS is making it almost impossible for her to fall asleep without thrashing all over the bed and her PLMD is what is causing her to jerk and twitch all night causing her to get inadequate sleep.

Maelee has been started on an anti-seizure medication that has been shown to have great results in children with PLMD.  We have to taper the dose up so it could take up to 7 weeks to have the right dose in her system and we are praying this is the right medicine for her or we will be starting the process again with another one if it doesn't help at all. Maelee has always had great iron levels but we are taking her again to have her Ferritin (iron stores in the body) level check as if this is low then it can cause her PLMD to act up and she will be put on a supplement. They will also be checking her other lab work periodically.

I hate this is one more or two more I should say things she will have her whole life....but she is a fighter and strong willed. She will manage this just like she does with everything else. :) Our miracle is made of something special!