Thursday, July 16, 2009

Melatonin Melodrama

A couple of months ago, the Mermaid Girl started complaining of headaches. Since these complaints mainly came when it was time for her to go to school, we pretty much blew them off, until one day school called and said MG had a bad headache that hadn't gone away even after she lay down for a while, and could we come pick her up?

So we made a doctor's appointment. Almost two years after our move, we have yet to find a pediatrician or primary-care doc who 1) we like AND 2) is taking new patients. I have a good dermatologist, but for most of our ad-hoc medical needs we go to the clinic down the road, where the bedside manner tends to be rather...brisk, and the quality of care varies wildly depending on who you get.

MG's doctor-of-the-day was predictably to-the-point. She asked a barrage of questions about the circumstances of both the headaches and MG's life in general: When do the headaches come on? Where in the head do they hurt? How much sleep does she usually get? What does she eat? etc. etc. I was bristling that she persisted in addressing me rather than MG herself, who was increasingly fidgety and monosyllabic: she didn't like the doctor, she was anxious about the outcome, she didn't like being pulled out of school where they were having a party. All in all, not the most auspicious of appointments.

I was fully prepared for--and halfway convinced myself of--a diagnosis of Dramatic Child Syndrome, but the doctor said she thought it was migraines, even though MG doesn't throw up or get dizzy and sometimes the headaches are only a few minutes in duration. She prescribed--rather scoldingly--more sleep and fewer additives and dyes in MG's diet. The main thing MG got out of this experience was that the mean doctor said she couldn't have any more chicken nuggets. I was similarly freaking out because even though the doctor seemed more concerned about orange dye than the cheese itself, cheddar cheese, a common migraine trigger, comprises about 90% of my child's protein intake.

We went home and calmed down a bit. The Renaissance Woman suggested that rather than dramatically changing MG's classic Picky Kid Eater diet, and putting the whole family through a morass of power struggles and behavioral and sensory challenges, we focus on cutting out dyes where we can (like, getting white cheddar rather than the orange variety) and on sleep.

Ah, sleep. Like her parents, MG is a night owl. She has had terrible insomnia for years, and it seems to be getting worse as she got older. I blogged a while ago about our decision to start giving her melatonin at bedtime, but I have to say now that this was pretty half-hearted and occasional, because we were afraid of her developing a tolerance and of unknown long-term effects. So it didn't make that much difference.

But in the face of possible migraines, and of the brusque chicken-nugget-hating doctor's assurance that MG would not develop a tolerance, we doubled her dose of melatonin--to 1 mg, still pretty low overall--and started dosing her religiously every night about an hour before bedtime. We figured if sleep deprivation was triggering the headaches (as well as the overall crabbiness, jumpiness, morning agonies, and circles under the eyes that we already knew it was causing) then that would be enough right there.

There followed a month of relative bliss. Every night, MG willingly popped two melatonin sometime between 8:30 and 9:30 PM, and, about half-hour later, fell over as if klonked on the head, begged to go to bed, and was asleep almost immediately. No more pleas for glasses of water and cold cloths on the head. No more plaintive calls from the bedroom at 10-:30, 11:00, 11:30, long after lights-out, asking for someone to change the disk on her nightly (and, theoretically, soporific) book-on-CD. No more irritable confrontations with a restless child who insists that she's TRYING to go to sleep, really TRYING, but her body just won't LET her.

And no more struggles in the morning with a pathetic lump who pulls the covers over her head and begs for just a few more minutes of sleep, just one more minute, she's so, so, so sleepy, she feels sick...Nope! Instead, we suddenly had a kid who popped out of bed at eight, often on her own without benefit of parental alarm clock. She was even on time to school sometimes.

The headaches didn't disappear entirely, but they lessened, in both duration and frequency. I started keeping a headache log, and determined that they mostly happened when MG was hungry (or at least when she hadn't eaten for a while-- she didn't always recognize it as hunger).

Then, suddenly, the night before last, just as RW and I were settling in to watch our nightly DVD episode of "Big Love"...we heard it. The dreaded cry. "Mommmmm! I can't sleeeeeep!" Despite the doctor's assucances, the melatonin had stopped working, just like that. In the morning, we had to drag MG out of bed, just like old times. Last night, since she was exhausted from the night before, she went to sleep easier, but this morning was just as hard.

I was surprised by how upset I was-- to the point of crying. We'd gotten so used to MG's struggles with sleep that they just seemed normal, until we didn't have them any more. Sure it's easier for us grownups when she goes to sleep quickly and easily and gets up on her own in the morning, but I also had a chance, in the last month, to see what MG was like with enough sleep, something she hasn't had on a regular basis for years. It wasn't a total personality transplant--she was still very much recognizeably herself-- but her temper was mellower, she was more willing to laugh at herself, she could deal with frustrations and challenges with more equanimity, and she seemed sunnier overall. Her life was better.

I'm not sure what to do now. Oviously we need to find another--better--doctor, to deal with both the headaches and the insomnia, and we're working on that. I also consulted Dr. Google (and his/her/its friend, Dr. Facebook) and determined that it's not unusual for melatonin to stop working after a few weeks, and that many (better!) doctors suggest running a schedule that's some variation of two weeks on, one week off. So we're stopping the melatonin for now, in hopes that it might be effective again for a while when school starts.

One of my favorite parenting bloggers, whose son has autism, used to have a tag line on her blog that read "Our special needs are just more obvious." And while I knew that was true, intellectually--everyone has quirks, needs, differences, no one is cookie-cutter "normal"--after the last few months I feel like I get it a little more.

MG needs enough sleep. I mean, she won't die without it, but for her intellectual and emotional and physical well-being-- and ours!-- she needs more sleep than she's been getting until this past month. We've been avoiding sleep specialists, partly because we've had the impression that the conventional medical wisdom holds that Bad Parenting (late bedtimes, lax routines, late TV-watching) is behind most childhood insomnia, even though that's not our experience, and we're not interested in being scolded or spending months on "solutions" that have nothing to do with whatever the causes really are. We'd been sort of limping along, figuring things would work out.

But when I frame MG's sleep issues as a genuine Special Need, suddenly it looks different. I find myself geared up to advocate for her, to brave the lax clinic pediatricians and the imagined sleep specialists and the contradictory recommendations and whatever is out there.

I feel like I should have some rousing finish for this, but I don't. Just hope that we'll all get a good night's sleep tonight.

13 Comments:

Anonymous Maddy said...

That's what it's all about, being an advocate for those special needs.
Best wishes

2:02 PM  
Blogger rachel said...

Fingers crossed for you three! Something will work. It has to.

4:05 PM  
Blogger Phantom Scribbler said...

I wish I had some brilliant advice to offer. But I don't know much about sleep issues. So I'll just say that I am hoping that you guys find a quick and easy path to doctors who can offer you help for MG's insomnia and headaches. It's a disorienting conceptual leap, when you realize you need to advocate for your child's special needs. But so worth it when you find solutions.

6:59 PM  
Blogger susan said...

No advice here, but lots of hope with the reconceptualization of the issue (which will take a lot of pressure of all of you, if you can directly find people who can help you with it). I hope you find the right folks soon.

8:13 PM  
Blogger Tall Kate said...

No advice, just sympathy. I really hope you find some solutions that work for you!

11:43 AM  
OpenID carbonelle said...

Thank you, and thank you for this post: a light just went on in my head about our daughter, dubbed "the amazing sleepless baby/toddler/child."

5:36 PM  
Anonymous Marina said...

Hi Elswhere,
Just reading your post as an antidote to some truly AWFUL television (what do real lesbians think of "The L Word" by the way?) before bed and am feeling very sympathetic and even more wishing I could send you my pediatrician for a few weeks to see MG and give you some better (read: decent, thoughtful and paying-attention-to-the-kid-in-front-of-her) pediatric advice. Is there no hope of a better practitioner? Do the have PNPs (pediatric nurse practitioners) in Canada? My thought is that if MG is going to need more than one modality of treatment it would be nice to have someone you like that you can go back to and say 'A worked better than B but is there a C?' and that will also relate to MG appropriately.

You and RW are such good mommies...

Best from WV,
Marina

9:42 PM  
Blogger Suzsqueak said...

I completely empathize with MG's sleep issues and headaches. I started having migraines when I was about 7, and the doctors had a tendency to blow off my mother's concerns, because it was thought that children didn't get migraines in the 1980s. We found that melatonin 3 nights a week, with a day off in between helped to reduce the frequency of my headaches and of my sleepless nights as a child. We also found that a ritual at bedtime helped.

All these years later the ritual still helps me sleep about 75% and one night a week I take a sleeping pill per my neurologist and my internist. All of these tricks really help reduce the frequency of my headaches.

If you need any tips or tricks, please feel free to ask me.

Suz

9:27 PM  
Blogger liz said...

I really like your reframing.

I've heard good things about using light boxes in the morning to reset the internal clock.

Massage and aroma therapy also work for some people. As do white noise machines (some white noise machines come equipped with aroma therapy attachments).

And the trick of counting backwards from 10,000 while visualizing yourself walking down a very tall spiral staircase works for me and everyone I've told it to, but may not work as well for kids.

11:02 AM  
Blogger the other lion said...

Melatonin makes you chipper in the morning because it works with the seratonin in your brain. It's a nice perk. =) My son, who has Fragile X Syndrome, takes melatonin. For a while he was taking clonidine and we may have to go back to it because neither of us are sleeping well.

I hope you can find a doctor to fit your needs.

6:55 PM  
Blogger Wired said...

We have been thinking about melatonin for our night-owl daughter. 4 year olds do not do well on 7 hours of sleep. Thank you for your experience.

I get food-triggered migraines myself, and I recommend an allergist (yes really). It was an allergist who fingered my food weirdness, where I react to things called 'flavinoids', which include sodium nitrate, caffeine, MSG, and sulfites. I can have a certain amount, but when I exceed my threshold, bam! My brain tickles. Which sound humorous until it happens to you. ;)

11:05 PM  
Anonymous Heidi said...

Are you familiar with color therapy? Indigo light shone for an hour on the face can help induce sleep. You can google the name Darius Dinshah for more info. I'd be happy to mail a slide to you--just shoot me an email: hmcbrid@hotmail.net.

2:15 PM  
Anonymous badgermama said...

Good luck with the sleep. And headaches. I find myself astonished and happy that you take her headaches seriously and want to thank you (which is just silly) and also ask you to go back in time and be my mom (which is even sillier). What I mean is, good job and it has to to be extremely comforting to MG to know that people are trying to help.

11:29 PM  

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