Thursday, May 03, 2012

The Hand You Are Dealt - Sleep Disorders

We have some friends whose kids are behind their peers in quite a few areas. We have other friends whose daughter has a sensory integration disorder. Still other friends whose son has a sensitivity to gluten and must be on a very strict diet otherwise he exhibits bipolar symptoms. And life goes on.

Every time a family that we know comes upon a challenge, I thank God that He has blessed us with such wonderful and healthy kids.  I find myself thinking, "That you, God, that that's not us!"  Our kids don't have any issue that plagues them on a daily basis (well, seasonal allergies plague EVERYONE, so I don't really count them).  They don't have behavior disorders or problems (disregard all of my previous posts on their antics!), they don't have diseases or lengthy illnesses. Our lives are easy!

Sometimes it feels like I'm waiting for the other shoe to drop. How many "disease of the week" articles have I read that start out, "She was a normal, healthy, fun-loving child until she was (fill in the blank) years old. Then it all started." Ahhh! Is that us?!?!?! I pray quite often that God will protect us from all of that

I watch families who have rough roads and listen to the way they handle their challenges.  The pervasive attitude is one of "that's life" and "you do what you have to do for your child".  You just do it.  You don't think much, you just do it  and you go on.  I often wonder how I would handle it if we had a significant challenge.  How would we cope?  What would it look like?  How would our "just go on" go on?  Then I remember.  We did have a pretty big challenge for a while.  And, in a way, it continues.

In September of 2005, Buddy showed signs of a sleep disorder (he was just over two years old).  He would go to sleep fine.  Never gave us much of a problem at all.  Then between 9:30 and 11:00 he would start kicking the walls and wake up screaming.  He would cry and cry and thrash around until we would come up and comfort him.  I'd walk into the room, pick him up, he'd put his head on my shoulder, I'd cuddle with him for about two or three minutes (the length of a lullaby) and then put him back down.  Then about two to four hours later, it would be the same thing.  At its worst, he would wake up five plus times a night (I would usually stop counting at 4 or 5).  We measured a good night as a night where he only awoke twice.  We would sometimes get one full nights' sleep, but usually it was once every 10 - 14 days.  
As an added bonus, this was also Princess' kindergarten year in a University Model school.  So I was trying to home school her three days a week.  Luckily, it's very hard to screw up kindergarten so I had some wiggle room there.  I may not have always been as patient as I should have been, but she learned to read, she learned to do basic math and we all survived. 

I began to understand why sleep deprivation is used as a torture.  After a while, it was hard for me to even try to go to sleep.  I didn't want to drift off because I knew that just as I did, he would wake up.  My memory was affected, my diet was affected, of course my mood was affected.  My relationship with Hubby was affected in several different ways - especially, um, night-time activities.  (Who wants to start something that just may get cut short by a screaming child?)  I look back at that time as if through a fog.  How did I do it?  I just did.  I went on auto-pilot and I got through it.

At one point during the ordeal, I remember telling someone about it and noticing that she looked horrified.  She said that it must be completely awful.  Until then, I hadn't realized that it really was that bad.  It just seemed like another thing to get through - like a cold or a scraped knee.  I was so dulled by the lack of sleep, that I didn't see it as a challenge.  It just simply "was".  It was how our lives were.

I did what I could to try to get help.  We prayed and prayed.  We talked to our pediatrician.  We tried letting him cry it out.  We tried going in as soon as we heard the kicking start.  We tried interrupting his sleep pattern by waking him up just before the usual time of his first episode (that actually seemed to help for a while, but it didn't stop them.)  We grasped at every straw we had.

Did you know that it is nearly freaking impossible to find a sleep expert to help a two-year-old.  I couldn't find one in Austin that treated pediatric patients.  They told me to call a pediatric neurologist, which I did.  Four times.  Never got a return phone call.  I e-mailed a sleep specialist whose website described similar wakings, but didn't list them as being as frequent as Buddy's.  I asked him a couple of questions - one being would he please pass on the name of a colleague in Austin.  The guy e-mailed me back and said that Buddy's wakings were behavioral.  No other name, no other explanation.  Thanks, guy.

My pediatrician told me that they were night terrors.  I know for a fact that they weren't.  My brother had night terrors.*  You couldn't come near him during one of those.  One symptom that was on all the night terror websites was that the "victim" could not be comforted.  Buddy was calm the moment I touched him.  I think that's why the internet doc thought they were behavioral.  But why would he kick and thrash and scream?  Nightmares?  Quite possibly.  Who knows.

The closest thing I came to finding a true diagnosis was on one website about sleep disturbances/disorders.  There's a fairly rare disorder called "confusion arousal".  The sleeper partially wakes (like in a night terror) and doesn't know where they are so they get scared.  It was characterized by kicking, thrashing and crying.  The kicking came first.  That's what clued me in as to what we were probably dealing with.  Every night I knew when an episode was starting because I would hear the boom boom boom of Buddy kicking the wall.  That was followed by a wail and then more booms.  I did a Google search for "confusion arousal" and found that there was no treatment.  He had to grow out of it.  I almost lost it then.  But there was that ray of hope - he'll grow out of it.

He did.  February of 2006 was our first truly good month.  For a while we counted a bad night as one with only two wakings.  It gradually tapered down to one.  Then it became rare to be awakened at all.  And when/if he woke it was usually because he'd had your garden variety bad dream.  No kicking to herald the arrival of screams from hell.  Just regular crying.  One of us would go in, tell him it's okay and he'd go back to sleep.  The whole thing was over in less than five minutes from first cry to door shutting.  (In the worst of it in 2005, sometimes the episode would be upwards of 20 minutes - not counting the time I would have to try to put myself back to sleep.)
Sometimes even now he'll have a night here or there where he has a fitful period.  He'll kick the wall and maybe cry out, but I've learned that if I leave him alone he'll stop within a minute or two and not remember anything about it the next day.  Every once in a while he'll yell something funny and that's always good for a morning chuckle.  

For a couple of years he's had maybe two or three severe nightmares per year - not quite night terrors, but a bit more intense than regular nightmares.  He'd come out of his room and call downstairs for me.  By the time I got upstairs, he was back in bed asking to cuddle.  Powerful feelings, but he was awake.  Now they have escalated into full-blown Screamin' Mimis.  Buddy still is able to walk out of his room and call to me, but he's panting and gasping and shaking like he's barely hanging on.  I've come upstairs to see him curled up on the floor or pacing or even just standing.  He had a Screamin' Mimi on a Cub Scout overnight and Hubby said that at that time he was crawling around the bunk on his hands and knees chanting, "Bored!"  (Buddy found that funny the next morning.  Seems he always says something that will make him laugh later.  Last week it was "I can't say 'thank you' to everyone who's taller than me!" and last night it was a very emphatic "Pretzels!")  It's pretty freaky.  Especially if you've seen The Exorcist.  I can understand how night terrors - or any sleep disorder - would be classified as possessions in less enlightened times.

Last night was particularly scary.  I was on the bed with Buddy alternately holding him (he would clutch me like I was his lifeline and then scoot away just as fervently) when he hopped off the bed, stood straight up, said, "NO!" then walked toward the door, said, "NO!" again and then jumped on the bed, crawled toward me and raised his fist like he was about to punch me in the face.  I didn't cower or flinch and maybe that's why he immediately melted back into a ball on my lap.  I couldn't help but think that I seriously dodged a bullet there and that next time he could hurt me.  I hate, HATE thinking that.  I don't want to be scared of my boy.  I know that he would never, ever hurt me in his right mind.  But while he's asleep, he has no idea what he's doing. 

I'm going to have to start charting his days - what he eats, what events happen, etc.  The first two of his recent Screamin' Mimis I think I can pinpoint the triggers.  On the Cub Scout overnight he was exhausted and the food was so bad that he only ate noodles and cake (Hubby was able to get him a protein snack later but it was too little too late).  Plus, he was sleeping in a strange place.  Hubby was with him, but it was still not his own bed.  The second event was the night of the STAAR test.  He didn't seem worried or stressed about the test on the outside, but maybe he was inwardly tense.  Dunno.  Last night's trigger is a mystery.  He seemed to be well rested and non-stressed.  So we'll just have to look at other things.  Sigh. 

So that is our family challenge.  This is something in our lives as parents that I know other parents look at us and think, "Thank you God that's not us."  We'll get through it.  We always do.  But I firmly believe that the only way we will get through it is the strength that God gives us.  There were days when I hadn't had more than two hours of sleep strung together when I knew I couldn't do it and He gave me His strength.  As I watch our other friends go through their trials with their kids, I pray that God will give them His strength and wisdom, too.  Thank goodness He doesn't leave us to deal with these situations alone.  He is always there to help us and to guide us.  And to sing us a lullaby and tell us it's all going to be okay.     
*In our family they are known as Screamin' Mimis.  In the 70's there were these vitamins that were akin to Flintstone's called Monster Vitamins.  They were in character shapes and one of the shapes was Screamin' Mimi.  One day when the commercial came on, it just clicked and the night terror nickname was born.  I seem to remember that every morning after my brother would have a Screamin' Mimi, Mom would open the bottle of vitamins and my brother would pick out a Screamin' Mimi shape and chomp the snot out of her.  We'd giggle and Mom would have to stop us from picking the rest of her shape out of the bottle and seeking even more revenge.  It was very cathartic! 


Anonymous said...

Milaka, I really am feeling for you. My youngest, Matlin has had several of these stretched over a year or so. I can not imagine going through it so frequently, but it is like you said, you just do. It is interesting to know what you have found out about it and I appreciate you sharing your info. We have not had any in a while, cross the fingers and hope that Buddy will taper off with his. The only thing I found with Matlin was that it seemed to be brought on by being overly tired and out of her normal schedule. Prayers are with you!

Cabin77 said...

Tamara, Thank you for commenting! I'm praying that this little "flare up" is very temporary. I'm going to really be watching his food intake and his schedule to make sure that he's not overdoing anything. I'll post updates here.


Flawless Mom said...

Man oh man. That sounds incredibly rough. I'm sure you wonder, as a mom, what is going on in that head of his when he's going through all of that. And does it make him exhausted during the day?? Wow. I do hope for you that this gets over with quickly. How long did it take to resolve itself with your brother? Thinking of you and your family. xo

Cabin77 said...

Flawless Mom,
Yeah, it kinda sucks. Last night I wondered what he was seeing in me (or instead of me) that would make him want to punch me. Yikes! No, he's not overly tired this morning. The whole incident was about 15 minutes long and he went right back to sleep. Strange.

My brother grew out of his frequent Screamin' Mimis by about 4th or 5th grade, I think. He would still have one the first night he would start an antibiotic, though, for years. He says that he still sometimes gets that "feeling" when he starts a medication. So I guess he's just matured into them rather than grown out of them? So, so odd.

Thank you for your thoughts!

Anonymous said...

I feel so sympathetic to you all. Sleep disorders came along with my illness, and I would wake 5+ times a night, sometimes with horrible nightmares. That seems to be going away for me - I pray that it goes away for Buddy.

Everything I am trying for this is way out on the edge for treatment, except for diet change. Hope that gives you some clues! If you want the name of a nutritionist in town, I have a good one to share.

Sending hugs --

Cabin77 said...

Thanks Alfreda89! I have a nutritionist that I like at People's Rx. I may talk to her if I can't get a handle on this. Last night was quiet so we'll see if we're over them for a while.