Selah’s Sleep Disorder…Help?!?!

I originally wrote about Selah’s sleep issues HERE.  That post brought me so much insight when several blog readers who are moms to children with brain “issues” (a variety of different diagnoses) contacted me to offer advice.  I was completely unaware that many children who have brain abnormalities also have severe sleep disorders.

 

Since that post, I have been able to research sleep disorders a little bit more, and our pediatrician has been working with us to help figure out how to best help Selah sleep like a “normal” child would.  We also have a consultation with a pediatric sleep specialist, which I’m discovering is a rare specialist (to specialize in pediatric sleep disorders), but Selah’s appointment with the sleep specialist isn’t until June 15 (which was the first available appointment, and we booked that months ago).

 

Anyway, I’m coming to you all again to ask if anyone has experience with specific sleep medications for babies/toddlers with sleep disorders.  We are so very desperate for sleep.  This is not at all a typical situation with a toddler who wakes multiple times per night (been there and lived that with our first-born)…nope, this is WAY different.

 

Now that I know a little more about sleep disorders, it’s so obvious that Selah definitely has a severe sleep disorder.  Y’all, the child gets less sleep than anyone in our household, and she’s only 19-months-old!!!  She does not take naps, and many nights, she only sleeps 4-5 hours, and that’s WITH prescription sleep medication!!!

Because prescription sleep medications are not usually geared toward 19-month-olds, we’re very limited in the options available for Selah.  So far, we’ve tried over-the-counter meds like Benadryl, Zyrtec, and Melatonin (all safe for toddlers), but those do nothing. 

 

The prescription meds we’ve tried are Clonidine and Kapvay (an extended release version of Clonidine).  Both Clonidine and Kapvay work for about 4 hours, then Selah’s awake and unable to go back to sleep.  Right now, Selah takes a cocktail of medicines, doused with much prayer, every night at bedtime.  She’s currently taking Prevacid, Zyrtec, and Kapvay at bedtime, and she still wakes Every. Single. Night.  Sigh.  And she doesn’t go back to sleep most nights until 3-5 hours after waking.  Bigger sigh.

 

So, my desire in posting this today is for HELP!!!  Perhaps someone out there also has a toddler who has gone through this, but they found medicine that helped.  We’ve learned that true sleep disorders (which Selah has) are lifelong and can’t be simply outgrown.  We know our Jehovah Rapha can heal all things, but so far, He’s chosen not to heal this.

 

Selah is such a little miracle that her sleep disorder is really such a minor concern, considering she wasn’t even supposed to live, was born with just a sliver of a brain, if she survived, she’d be a “vegetable”, and yet she is THRIVING, running, jumping, talking, laughing, climbing, discovering, learning, and blessing our socks off.  Not sleeping is truly a small challenge given Selah’s prognoses. 

 

One thing I’ve noticed is that Selah seems to scratch her head most of the nights that she wakes up.  Over and over and over, scratching, scratching, scratching.  (No, she doesn’t have lice. :-)  Intense scratching.  This has made me wonder if perhaps the dissolving plates and screws in her skull are bothering her, but her neurosurgeon and reconstructive surgeon don’t believe that’s the case.  So, we really have no clue what else we can do at this point.  We’re all eagerly counting down the days to June 15 for that pediatric sleep specialist consultation.

 

Praying someone who reads this will have walked the sleep disorder path with a toddler who can give us more insight and advice.  Plus, your prayers are ALWAYS appreciated.  Thank you!

 

PS  This is not a normal sleep interruption type of thing with a typical toddler, so all of the “normal” sleep advice isn’t applicable.  We’ve already been there and done that, to no avail.  Just google pediatric sleep disorder for a better understanding of what we’re dealing with.  Man, I feel for all those parents who have struggled with a child who has a sleep disorder.  Hard stuff, yet because it’s not life-threatening, I’m still comforted that it’s “just” a sleep disorder.  God supplies our rest, and He is getting us all through these sleepless nights, but we’re all longing to sleep through the night again!