In which I cross my fingers

This has been an unbelievable week. 

My brother-in-law’s younger brother passed away on Wednesday morning.  Then, his sister died on Thursday evening.  It’s not my story to tell but it has been, as anyone might imagine (and forgive my profanity), a bitch of a week.

Toss into the mix the fact that Nik is not ony not sleeping through the night, but he’s getting more and more agitated each night that he is unable to sleep.  The poor kiddo wants to sleep in the worst way.  Last night, as he fought to go back to sleep for nearly four hours, he alternated between lying in his crib, sobbing and punching himself in the head, and sitting up —also sobbing— and banging his head against the crib.  He would calm himself down and lay down to go to sleep only to be sobbing twenty minutes later.  It’s been heart-wrenching —and beyond exhausting.

Those of you who’ve followed our story for some time already know that we use melatonin, we’ve tried a variety of medications, relaxation techniques, etcetera. Nothing works.  The bigger he gets the worse it gets.  Now, the patterns of disrupted sleep even show up on his EEG’s.  Sleep Maintenance Insomnia is the official diagnosis.  I kid you not; there is such a medical diagnosis and it’s actually fairly well-studied, documented and classified.  And it’s not a good thing for an already undersized, developmentally delayed child with growth issues. 

The human body does most of its growth and repair during sleep; children Nik’s age should be getting an average of ten hours uninterrupted sleep per night.  On a good night, Nik will get about three and a half hours in before he wakes.  Some nights he’s only awake for a short while —twenty to forty minutes.  Others, like the last three nights in a row, he is awake for just as long as he has been asleep.

Tonight, we began a trial of clonidine at bedtime.  We’ve been reluctant to use it because of Nik’s history of rebounds and adverse or paradoxical responses to nearly all medications which alter the balance of his central nervous system.  Desperate times call for desperate measures.  I am worried that we’ll see a lot of grogginess tomorrow —and probably some significant behavioral challenges.  But, you know, I think I can handle those if I’ve actually gotten a good night’s sleep.

Fingers and toes are crossed!