Wednesday, July 6, 2011

What is sleep...

No, that is not an answer to a Jeopardy question..  Sleep is something that has been lacking in our household. I wish I could have been more prepared for the lack of sleep I have had over the past few months, maybe I would have bottled up some ZZZ’s.

I probably shouldn't complain about not getting enough sleep either, Jackson slept through his infant-hood like a champ.  Even when he was teething, he would sleep through the night.  Looking back, I think he woke up in the middle of the night before he was 2 around 20 times.  Even when he woke up, it would only take 45 minutes to an hour to get him back to sleep.  I was the baby whisper back then; I could walk him up and down the hallway with him facing outward.  He did not like to rest his head on your shoulder and wasn't much for the pat on the back either. Either way, we had it easy then…

Now flash forward to a few months ago… Quick timeline… we got Jackson’s diagnosis on January 11th, 2011, Jackson turned 2 in February, and we went to our first Fragile X group meeting/dinner in early March.  At the dinner it was so wonderful to meet all these other families in our area that have a child that has been diagnosed with FXS. There were two questions that I remember most from that night, “How is Jackson sleeping through the night?” and “What does Jackson like to eat?” I think every parent there asked us that.  Both of the questions were easy for me to answer, he is a good sleeper and there isn’t anything this kid won’t eat. I remember the car ride home talking with Sara and she said everyone asker her same questions.  Little did we know that shortly after that night everything would change for our family.

Sleep deprivation begins…Jackson started off with going 3 nights without waking up in the middle of the night, then on night 4 he would wake up and be wide awake for 3 -4 hours. Then he would sleep 2 nights and on night 3 up for hours.  Then back to 3 nights… up on night 4.  Sara asked one of the therapists if she had any suggestions.  She said to check with our patrician first, but that Melatonin might help.  Sara called the pediatrician, I turned to Google. We both found the same answer and that is Melatonin is a hormone that our body naturally creates to help us sleep.  The pediatrician was OK with Jackson taking Melatonin, started off with 1 MG. The first night was great and Jackson actually went to bed easier. This worked well for a week, then we were back to a night here or there of waking up. So then we upped to 2 MG. Same thing, worked well for a week. It was about this time we went to Chicago to meet with FX doctor.  She told us about extended release tablets and suggested trying those at 2 MB. If that didn’t have good results, then to try 3 MG and then if that doesn’t’ work then she will prescribe something called Tenex.  So Sara went to a naturalist store and found the extended release Melatonin.  I would say the first week seemed promising on the 2 MG, but then we had 3 nights in a row of wake ups. So we tried 3 MG and that didn’t work either.

Sara felt we needed to try the next step, Tenex and called FX doctor. Since I was on Jackson duty when we were in Chicago, I didn’t hear what the FX doctor had to say about this medicine, so again I went to Google.  I have to say I am really leery of any medication. Tenex is a blood pressure medicine that is sometimes prescribed for ADHD and hyperactivity.  Jackson is 2… and yes he is active and might not stay put for awhile, but again he is 2.  I am not comfortable with using medication just yet. Sara and I talked about it a lot. The first night with half a pill, Jackson went to bed easily, but at 12:30 AM he was awake.  He was also very agitated, seemed that rocking him made that worse.  It took awhile to get him back to sleep, then a few hours later same thing.  I forgot to mention, we padded Jackson’s crib because he has been using it to bang his head to the point of developing a large knot on his forehead.  We are used to the bruises, but this knot looked like we were trying to raise a baby Unicorn.  Each time you get him to sleep and put him in his crib, you are back to square one and fighting to get him back to sleep.  So we caved as parents and have been bringing him to our bed to get him back to sleep and so we can get some sleep too.

So the 1st night on Tenex, not a great experience in my books.  Sara was told it could take 2 -3 weeks, so we gave it a few more days before calling the pediatrician to see if we can give him his Melatonin along with it.  She said that was OK and it worked one night where he slept all night in his bed. We waited out the full 3 weeks before calling FX doctor. She changed us to a full dose. We tried the first night and going to sleep was easy, but again at 12:30 AM he is up, but this time he goes back to sleep and stays asleep till 4 AM. We have been on this pattern now for almost a week. He seems super chill throughout the day and the therapist feel he seems much more focused during his therapy sessions.  Some nights when he wakes up you can tell he is having such a hard time getting comfortable.  He is violently thrusting himself around the bed until he finds that perfect spot. You have to ready for this because he will knock with his head wherever it lands like your face, your head, your nether regions…  This tossing and turning can go on for an hour which has created some crazy tension and frustration for us.  I feel bad that Jackson can’t tell us what he is feeling; I hate that more than anything.

So everyone in our house is walking around like Zombies. Takes me back to that scene in Date Night where Steve Carrell and Tina Fey are at dinner and Tina’s character says, “If I lay my head down on this table I might sleep for a month.”

1 comment:

  1. Shanon, thank you for this great look into your family. New parents of kids with Fragile X are going to find this a really good resource!