Monday, November 30, 2009

May the sleep be with you.

And also with you.

For years these have been the last words uttered between Nik and I as we drift off into a hopeful sleep. Anyone who lives with a child with a sleep disorder knows that it can be rough. The hardest part, I might add, isn't waking in the night but the long days that follow when we must still function. We must be patient and loving, responsible and alert, even when all we want to do is lay down in the fetal position and sleep a long dreamless sleep.

You'd be surprised -- or maybe you wouldn't -- just how unhelpful our doctors have been. I vividly remember one time when I was still working and in the middle of an intense five week program attended by 30 foreign diplomats for which I was largely responsible. Oliver hadn't slept in 4 nights and I was on the brink of despair. I called the pediatrician's office and couldn't stop sobbing. Bring him right in, they urged me. I walked out of there a half hour later with their sympathy and a recommendation for melatonin and benedryl. That was it. And it was not nearly enough.

Oliver is seven now and we've finally gotten someone to take the issue of our sleeplessness seriously. I'm not crazy about medicating my boy but at this point I'm starting to believe that we don't have much choice anymore. What else can we do that we haven't already tried? So. Clonidine. We started giving it regularly ten days or so ago and, after adjusting the dose a bit, it looks like we now have sleep -- seven to ten hours every night for the past five nights. I'm seeing some other differences as well -- the constant restlessness, the galloping the running -- they all seem to have abated a bit. He seems calmer and less impulsive. He has surprised me with word choices. Instead of: "I want eat," he says, "Let's go eat." Even, "I'm hungry," with the all important use of the pronoun. I don't know if that is the clonidine or the effect of some solid sleep. A bit of both? Either way, I'll take it.

I felt a little weird putting this post together. It seems so revealing to talk about my son's medications. But I spent a couple of evenings looking for blogs that mentioned the use of clonidine for children with autism and I couldn't find anything useful. Judging by the comments I got on my last post about the subject, I guess other parents are giving it a try and I wonder: why is there so much written about diets -- what we feed our kids and what we don't feed our kids, but so little sharing about medication? Why is there such a stigma? Because, really, if medication helps us get some sleep then I'm gonna feel like shouting it from the rooftops.



8 comments:

  1. Zzzzzzzzzzzzzzzz

    I'm so glad you are getting some rest. Chronic exhaustion is no way to live.

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  2. Great news Christine!!!!! Fantastic!

    Medication is not the enemy, and I'm not sure why it is sometimes made out to be.

    Sweet dreams my friend, to you and to Oliver :-)

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  3. It's like medication in general is mostly untrusted by parents with kids with disorders, especially if they think they got the disorder from some medication (Hello flu shot!).

    As a brand new parent I tend to want to give the baby only vegetables and even shrug at formula for feedings. But realistically, I can't be afraid of the science. I just need to get over it. I don't want my son to be a vegan hippy but I just don't know where I get all these crazy ideas about what I'm giving him.

    Congratulations on finding something that works. That is, after all, the hardest thing to do in the first place.

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  4. So glad you found something that works. :-)

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  5. Christine, I almost cried reading this post. I'm so happy for you! (and I am so calling our neurologist) Phenomenal to finally be getting some sleep! Sleep on...

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  6. I know this is important, but I must admit that I am one of those moms that feel uncomfortable talking about medication. People have very strong reactions to it. Although for us it has been extremely important in the progress my son has made. I guess in a world of cloth diapering, homemade baby food, and organic EVERYTHING admitting that you are indeed medicating (gasp) opens you up for judgement from people who may have no understanding of why.

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  7. THANK YOU for posting this. One of my twins sleeps until 4 am only once or twice a week. Now I have something to suggest to the doc. Benadryl, melatonin, valerian, ugh!!! Won't touch him! haha
    Thanks so much for sharing, appreciate it.

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  8. I appreciate this post, and also other parents who discuss their children's medications, pro and con. We haven't used any medication yet, but I do have a friend whose autistic son was able to start answering questions once he took an SSRI. The possibility is always in the back of my mind.

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