I’m so glad I got to meet with Selah’s sleep specialist yesterday. The EEG portion of her sleep study still hasn’t been read, but the doctor was able to review the results of her sleep study (minus the EEG). Everything was normal, including no sleep apnea, so this tells the sleep doc that Selah’s sleep disorder is definitely neurological, which we assumed. The good news is that because Selah doesn’t have sleep apnea, she’s now eligible for an array of possible sleep medications that she’s never tried before. (If she had sleep apnea, it wouldn’t be safe for her to take many of the prescription sleep medicines available.) We’re so grateful to know there are other meds out there that might help Selah sleep better. Hallelujah!
The sleep specialist decided to keep her on her current sleep cocktail, but wanted to add a third drug to the mix called Neurontin (generic is Gabapentin). It’s a drug that was originally intended to treat seizure disorders, but it apparently wasn’t as effective as they’d hoped. It did, however, knock the patients out, so many sleep specialists now use this drug to help induce sleep.
Selah will start with only 2ml’s of this new drug per night. If that doesn’t work after 3 nights, we’ll increase it to 4ml’s. We can go all the way to 10 ml’s. The doctor said to watch for increased aggression during the day, as this is a common side effect. Selah already has issues with impulsive aggression, so we’re praying there’s no increase in daytime aggressiveness! And, of course, we’re praying this new medicine will help Selah sleep through the night. Oh how glorious that would be!
I realized yesterday while sitting in the sleep specialist’s office that it’s been over a year now that Selah has had this severe sleep disorder. It feels so different than life with a newborn when one doesn’t get much sleep. Maybe it’s because Selah is so difficult to manage in the night (and day!)?!?! When Selah wakes, she’s usually up for several hours, but not usually happy during this time. She’s so stubborn and so strong-willed and so out of control that it’s just exhausting. I praise God that He gave me Mattie and Meribeth to help share night-time Selah shifts. I seriously don’t know how I’d survive without their help. Each of us takes an hour long shift, and sometimes we have to resort to waking up Dad. We try to let him sleep because he works outside our home during the day, but there are desperate times when we need Daddy’s help. God has blessed me immeasurably by giving me so many helpers with Selah. At age 41, I’m fresh out of pep and spunk!!!
Please join us in praying that this new medication will enable Selah to sleep peacefully through the night without experiencing daytime aggression or other negative side effects. Thank you so much!
Update at 11:15AM Saturday: Selah slept through the night last night! She went to sleep at 8:30PM and woke at 6:30AM. She had leaked through her diaper and was soaking wet. Perhaps she might have slept even later if she'd have stayed drier. I changed her, then crawled into the full-size bed that is in her room. (She sleeps in her crib in her own room.) Selah snuggled and held still for an hour, without fighting to get up, which she has never done. At 7:30AM, I took her into our master bedroom so she could snuggle with Daddy. Instead, she laid across my chest and gently patted Daddy's face. So precious. She did this for another hour! She has NEVER sat still in bed with us for even 2 minutes!!! Then, at 8:30AM, she rolled onto her back, pulled the covers up to her neck, and went back to sleep! She woke at 10:30AM, instantly crawled out of bed, and was ready to start her day. She's been a little cranky, but we'll see how the rest of the day goes. I'm in awe that 2ml's of this medication had that effect. WOW! Hope it continues!!!
Saturday, September 29, 2012
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