A new trial

We thoroughly expected that once Will was completely healed from his sinus surgery, he would miraculously sleep through the night.  He has been so congested over the past couple of years, that it seemed as though it must be the congestion keeping him awake.

I think Nate will agree with me that Will has been sleeping worse since his surgery, not better.  And while he isn't congested, he wakes up frequently.  A lot.  And while we are pretty well-versed in the act of waking a couple of times a night, crawling out of bed 5 times a night gets old for all of us.

Luke has been having a really hard time with acting out over the past month - both at school and at home.  Our first thought was that it was tied to Will's frequent night time wakings, so last night when things got pretty bad, we moved Luke into our room on a little bed.  He woke up happy and perky (his typical) for the first time in a while this morning, so we knew it was the right move.

This realization was the kick in the pants that I needed to start involving some of Will's doctors on the difficulty we have been having with his sleeping.  I know that it isn't typical for children with special needs to have trouble sleeping, but this is getting to be unbearable.

The first thing his neurologist and physiatrist did was review the sleep study that we did last year.  Remember I thought it was useless?  Well it turns out that one important thing was buried in it, something that we overlooked when we read the original report.  The sleep study showed that Will has periodic limb movement in sleep (which a lot of people have), but his legs were moving enough in his sleep that it was causing him to wake up 5 or 6 times during the night.

Hmmm...

The likelihood is that when Will got Botox in his legs last year, this night time leg movement was reduced or eliminated.  Now that the Botox is wearing off, the effects of the limb movement are showing again, especially at night.  And we might be more aware of the situation since we thought we'd be sleeping like kings post-op, not worse than before!

When Will wakes in the night, he doesn't wake up all the way.  He is irritated by something and has rolled onto his back.  We roll him back onto his side, but every single time, both of his legs are rigidly tight.  From his hips to the tips of his toes.  Tight as can be.  The only way to bend his knees and get him to relax is to manually turn his foot inward (thankfully we learned this move from a physical therapist very early on - it has been helpful!).

So with the details on the limb movement and the fact that Will's legs get this rigid, his team felt that a night time trial of baclofen was a good idea.  Baclofen is a drug used to treat muscle spasticity, and it is frequently used to help kids with the same type of cerebral palsy that Will has.  Thankfully Will's tone isn't high enough to warrant baclofen all the time (it can be taken orally or in serious cases, a pump is surgically installed in the abdominal cavity to administer a steady dosage to the patient).  If he took it all the time, we would likely lose the good muscle tone that he has developed to control his head, neck, arms and trunk.

Tonight is the first night of the trial.  If it does what it is supposed to, Will's legs won't move randomly throughout the night and wake him up. And it should be worn off in time for him to use some of his good muscle tone in the morning.  I am anxious to see if this has any effect on Will's night time wakings.  Just in case, I have a bed set up for Luke in our room.  Just in case.