Two years ago, before we had Brianna's diagnosis, her sleep began to deteriorate. It went from what I expected from a breastfeeding toddler (nursing every couple hours, but except for frequent wakeups, no major issues falling asleep and staying asleep). After she got her feeding tube (18 months) I thought maybe she would sleep more deeply. Nope. As my pregnancy with Liam progressed, and her sleep deteriorated, I began to wonder HOW I was going to cope with a newborn and a child who needed constant attention through the night. This was when we began using Mickey Mouse Clubhouse as a way to keep her happy while I could at least doze. But I knew we couldn't keep it up. While visiting on the mainland for two months, Brianna was falling asleep at 5am, and waking around 9/10am. No naps. This continued when we got home. At this point, I started using the "Sleep Lady" sleep training technique and we also used melatonin to "reset" her sleep cycle. I've never been a fan of the idea of sleep training, but I believe that it was necessary, for both of us. After a few weeks, blessedly, she was able to fall asleep on her own, and typically slept through the night. About 2 weeks later, Liam was born (and we know how babies sleep!)
In the nearly two years since Liam's birth, Brianna has had fairly good sleep, at least for a child with PDCD. She easily fell asleep on her own. A couple times a week we would hear her awake in her room, chattering happily to herself, but she rarely was upset. We assumed she would just wake up, hang out, and fall back asleep. A couple times a month, especially if she was unwell with sinus problems, she would wake up upset. We'd rock her, soothe her, maybe have to spend an hour or so comforting her, but she would fall back asleep without much issue.
Around two months ago it began to change. Exciting things have been happening. In February, we changed her Ketogenic diet ratio from 3:1 (fat to protein/carb ratio) to 4:1. This seemed to have a profound effect on Brianna - almost as drastic as her changes upon starting the ketogenic diet. Her energy levels increased, and she began to become much more active. Walking while holding just a hand, or someone holding onto her shirt. "Chattering" more. Becoming more interested in what was going around her. Having a better time at school. Two months ago, she started exploring the house a lot more. She began to figure out how to get out of bed and open the door. This started in the morning, but about 2 weeks ago she figured out how to get out at night (previously if she got out of bed, she'd just crawl to the door and cry...now she stands up, opens the door, and then gets down to crawl and find someone). She would wake up starting once or twice a week, crying. I could tell she was having major issues with congestion. She wasn't alone, about two months ago many people, including myself, started to notice issues with sinuses and whatever was going on with the weather/VOG (volcanic "smog" if you will, from the erupting volcano on the Big Island). It really was affecting her sleep. When she would wake up, she couldn't breathe very well, so she wanted to be up, because it felt better. After a few weeks, what was intermittent had become a nightly thing. First for an hour or two, then for hours. We resorted again to letting her watch Mickey Mouse Clubhouse, just so we could function.
This picture is from July 24th, about the time our sleep struggles began.
For the last two weeks, Brianna has been going to bed, after much coercion and repeated attempts to put her in bed, around 9pm. Then she wakes around midnight, not going back to sleep until anywhere from 3-5 am. Naps are almost nonexistent (she just comes out of her room). This has started to impact her in big ways. We have noticed a lot more chorea (uncontrolled waving arms of the arms and hands). Also, she was beginning to have "fits" again. Things would set her off into a seizure-like event (could be an actual seizure, I don't know for sure). After over a year without seizures, and with her much bigger and more aware of what's going on, it is heartbreaking to watch. She screams when they happen, and her whole body flails uncontrollably. Afterwards, I just hold her and comfort her until she gets distracted (by Mickey Mouse, of course). Her nurse at school told me that yesterday she had about a 2-3 minute seizure.
I am INCREDIBLY fortunate to have a support group on facebook of other PDCD parents. I truly don't know how we would survive without them. I tend to be a "suck it up and press on" kind of person, and honestly, a lot of times it doesn't occur to me to ask for help until I'm past the point of coping. At this point, I desperately told the group what we were going through. Many offered great advice about dealing with her sinus problems. And several of the mothers explained the sleep problems they've had with their children. A popular medication is Clonidine, safe for children with PDCD, and with few side effects (and not addictive). I wrote a desperate email to her metabolic team, and they agreed that Clonidine was a great next step.
Last night we started the Clonidine. I would say it's a moderate success. She went to sleep more quickly than she has in weeks, asleep by 7pm. She woke up around midnight (her usual wake time of late), and I laid in bed with her. She was back asleep within an hour. Also a first in a while. Now it's five am and all the children are awake sitting on the couch watching Mickey Mouse. The Vog is hitting our family hard, they've all got hoarse voices and coughs. I'm praying for the trade winds to help us all feel better.
Hopefully the Clonidine will give Brianna the sleep she needs. Keep her in your prayers, as always!
