Wednesday, December 10, 2014

Sleep Deprived

"Just imagine how much she could learn if she got this amount of sleep each day." These are the words that I hear from Ellie's teachers, therapists, and from my own lips.

All bright-eyed and bushy-tailed in the early morning.

It breaks my heart when I see my daughter struggle.  She is very clever and determined and wants to learn.  Yes, she has ADHD that is mostly managed by Tenex and Adderall.  The stuff really works. . . provided she has enough sleep.  She is not getting enough sleep most days of the week.

Like adults without enough sleep, kids are cranky and irritable. However, the biggest differences which are the most detrimental to my daughter's functioning at school and in home are:

Sleep deprivation breeds sleep deprivation and sleep deprivation leads to increased impulsivity, hyperactivity, and inattention.  

All of which are signs of ADHD.  In fact, on days that Ellie does not get at least 8 hours of sleep, it is as though she didn't get any of her ADHD medications.  Actually, it is worse because she is so agitated.  There are meltdowns at home and at school.  Running away from the teacher.  Unable to sit still and well, just sit in general.  Grabby of other kid's clothes and food.  Essentially, my daughter cannot function.  At all.

Actually, I am unable to function!  I am exhausted and forgetful.  Some days, I feel as though I am losing my mind--like when I left the new camera at the restaurant or when I couldn't find the scissors which I apparently put in the drawer with the measuring cups.   I am just want to crawl back in a hole and lay in the fetal position.  Sadly, I cannot do that no matter how much my sleep deprived brain and body beckon me to.

This would be me on most mornings!

Summary of Ellie's sleep patterns:

Actually, there is no pattern.  Two to 4 times a week, Ellie wakes up really early and typically does not fall back asleep.  By early, I mean waking up for the day sometime between 12:30am-3:30am.  It can happened 2 days in a row, or every other day, or 2-3 days between episodes.  It happens on school days, weekends, and vacation days.  This all happens even with a good bedtime routine, white noise, blackout curtains, and a consistent, regular bedtime.  Her sleep issues are only related to waking up ridiculously early and do not involve falling asleep.  She is happy and she plays, in the dark, with her blankie, books, and stuffed princess dolls that she is allowed to have in her bedroom.

Ellie wanting to be carried into the house after
getting off the bus.

Here is what has happened in the last 1.5 months since my last sleep post:

As per the Neurologists orders, we gave Ellie 3mg of melatonin before bed each night.  This dropped Ellie's early morning wakings from 3 x week to just once a week.  This only lasted for 2 weeks. Maybe it was a fluke or many she just built up tolerance that quickly because after those 2 weeks, she returned to waking up at 2:30am at 3 times a week.

We then bumped up the melatonin to 6mg.  We gave this some time and sadly, did not see any difference.  At all.  I was really hopeful that the 6mg of melatonin would do the trick.

As we waited to hear back from Neuro (seriously, it takes days to hear back from this office), Ellie developed a new talent--turning on her bedroom light.  The first time it happened, I just assumed that in my sleep-addled state,  I forgot to turn the light off when I checked in on her.  By the 3rd night, we caught Ellie reaching for the light switch by standing on her pillow.  At that point, we started to turn off her light via the fan chain.  Unfortunately, she witnessed this and started to build a mini-tower out of pillows and stuffed princess dolls on her bed to pull the fan chain herself.  Andrew remedied this right away by removing most of the chain so that just 1.5 inches is left hanging.  Do you know what this means?  Now I have to climb on top of the bed to turn Ellie's light on and off.

Taking a short rest during dance class

After not hearing from neurology for several days, I got a text from CVS stating that "Ellie's prescription is ready for pick-up".  I mistakenly assumed that it was the auto-refill on her Tenex.  As it turns out, Neuro decided to start Ellie on 100mg of Neurontin and then increase it to 200mg after 1 week.  It was in liquid-form.  Ellie does not do liquids.  She does pills.  They would know this if they had talked to me first or even, *gasp* looked in her chart. Still, it would be a small amount of liquid and I figure I could get it into her.  I think it is interesting that I learned Neuro's plan of care through the pharmacist.

Can you believe that 2 month-old Ellie slept better than 5 year-old Ellie?

I would love to tell y'all that the Neurontin was/is awesome, but I cannot.  I have been tracking Ellie's sleep for months now and I could tell no discernible change in her random early morning parties.  They still occurred 2-3 x week and usually with those awakenings anywhere from 12:30am-3:00am.  Occasionally, she would fall back asleep around 4:30/5:30am and sleep for another hour.  One thing that I did notice, was that on some nights, she was taking longer to fall asleep.  It wasn't every night, but it was new.  One night, she didn't fall asleep until 6am!  That when when I put the call into Neurology and proclaimed that "this is not working!".  I spoke with a nurse in great detail about how there are NO changes in her waking up, but that I am concerned the Neurontin is affecting her ability to fall asleep.  I hear nothing . . . for almost a week.  During the course of that week, I was weaning Ellie off the Neurontin.

This is the "I am so tired that I will have a meltdown in just a minute" look.

In the meantime, Ellie had a follow-up with ENT.  Just a routine thing, but I mentioned The Chunky Chicken's sleep issues with Dr. Z. I got an immediate referral to a pediatric sleep specialist. Ellie's appointment isn't until mid-January, but it is better than nothing.  While I do believe that most of Ellie's sleep issues stem from her ADHD brain activity, it would be good to rule-out other issues such as sleep apnea, seizures, and all sorts of other things that can contribute to insomnia and early wakings.

At the advice of a few friends, we are also looking into Ellie's diet to see if there are trigger foods, considering the addition magnesium supplements, and also researching essential oils.

I wish I felt this chipper in the morning.  

Of course, the day before I plan to completely discontinue the Neurontin, I hear from the neurology nurse.  We are to increase the Neurontin to 300mg x 3 days with a final increase to 400mg.  Um, right.  I said "even though it may be causing her difficulty to fall asleep too?".  As usual, Neuro brushes off my worries and acts like I am making stuff up or "don't understand".  I find it very annoying seeing as Ellie is being treated for ADHD by a pediatric NP and I used to work as a pediatric NP who also managed kiddos with ADHD.  Of course, I have no idea what I am talking about!

The good news is: I got the 400 mg in capsule form.


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1 comment:

  1. So sorry to hear about this!!! That Neurontin is nasty stuff. Lil was on it for a while and it caused her to have a ton of issues going to sleep and just being agitated all together. I'm talking like ripping out hair, biting herself... she is non verbal so I have to take my cues from her behaviours... it just wasn't the right fit... now that she knows all these behaviours get responses they are in her repertoire, I'm sure as you know though its pretty easy to tell when a behaviour is voluntary or not. We know our kiddos the best, and I hate all the specialist doctors that act like your "crazy" or "don't know". Lil has a few great specialists and some not so great ones.

    Hang in there! Here is hoping you get some sleep soon!


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