*02/15/2013 update at bottom of post
*09/06/2013 update at bottom of post
Sleep deprivation is a common complaint around here (especially at our Facebook group). High need babies tend to have trouble falling asleep, may have late bedtimes and early mornings, resist naps, and have broken sleep.
This often means total exhaustion both for baby and for mom. And lack of sleep usually leads to an overtired baby who has even more trouble falling asleep and staying asleep. And once this vicious cycle of lack of sleep starts, it’s difficult to break it.
I wanted to share something with you, not to scare you, but to underline the importance of making sure you do everything in your power to help your child sleep.
I don’t share much about my daughter on this site, mainly because my son has always been so much more ‘spirited’ than her.
But one area where he has her beat is at sleep. Once his head hits the pillow, he’s out (we won’t talk about the fact that he often ends up in our bed in the middle of the night).
My daughter, on the other hand, has always had difficulty falling asleep at night. From the time she was about 2 years old, she has fought bedtime. We’ve had a routine from day 1, but even so, sleep eludes her often until 10 or 11 at night.
And of course she doesn’t sleep in…no matter what time she falls asleep, she’s generally up at the same time each morning.
Many times 11pm would come along, and she would be obviously frustrated and upset that she couldn’t fall asleep. She *wanted* to fall asleep, but insisted she didn’t feel tired.
That’s why, from the time she was about 6 (she’s 8 now), we started giving her melatonin at night. We were amazed at how much it helped! We’d give her 3 mg of melatonin 30 minutes before we wanted her to go to sleep, and like clockwork, 30 minutes later she’d be asleep.
We researched the effects of melatonin on kids before we gave it to her. Most websites indicated it was fine to use in the short term, but that long term use hadn’t been studied.
After we had been giving it to her off and on for almost 2 years, we checked it out with our doctor (hmmm, maybe we should have done that sooner?). He indicated it was probably fine to give to her, but to keep it to 3 nights a week.
Skip ahead 6 months…
Aliya came to us one night after we had given her melatonin, and she had been in bed about 30 minutes. She was a bit shaky, and seemed a little scared. She told us that as she was falling asleep, her ‘teeth started chattering’.
Honestly, we didn’t think much of it. We told her it was probably cold in her room, or maybe she was dreaming. Or maybe it was one of those random things that happen when in you’re in that space between awake and asleep (like when you get that sudden sensation of falling).
This happened for the next 2 nights, and by the 3rd night, we were beginning to wonder if there was something to this. She said that she had even gotten out of bed and walked to the mirror, trying to get her teeth to stop chattering. We told her the next time it happened to come get us and show us.
We didn’t have to wait long. The next night, Aliya came into our room, again about 30 minutes after going to bed (and after having taken melatonin). I was still up watching TV, but what my husband saw was definitely NOT just ‘chattering teeth’.
One side of Aliya’s mouth was drooping, and she was drooling heavily. She was trying to talk, but her words were coming out garbled…like gibberish. It lasted about 10 seconds. Slowly, her face returned to normal, and she was able to speak normally.
It was terrifying. We had a quick consultation with Dr. Google, and immediately recognized that this was most likely a seizure. A seizure? In my perfectly healthy little girl?
But the research seemed clear…here are a few excerpts we found online:
“Always ask your child’s doctor before giving melatonin to a child. In fact, doses between 1 – 5 mg may cause seizures in this age group.” – University of Maryland Medical Center
“It has been suggested that melatonin may lower the seizure threshold and increase the risk of seizure, particularly in children with severe neurologic disorders. However, multiple other studies actually report reduced incidence of seizure with regular melatonin use. This remains an area of controversy. Patients with seizure disorder taking melatonin should be monitored closely by a healthcare professional.” – Mayo Clinic
“Melatonin should not be used in most children. It is POSSIBLY UNSAFE. Because of its effects on other hormones, melatonin might interfere with development during adolescence.” – Medline Plus
How could we not have known this? How could we have been risking our daughter’s health in this way? I had even told some parents on this site to try melatonin for their children! (This is why I feel I need to share our story here).
Needless to say, we stopped giving her melatonin from that night on. We watched her closely, and determined that if it should happen again – which we doubted, as she was no longer taking melatonin – we would take her to see our doctor.
3 months went by, and all seemed fine. She struggled, once again, with falling asleep at night, but of course we were willing to live with that.
Then one night a few weeks ago, she was having a particularly hard time falling asleep. In fact, she had stayed up late a few nights in a row, despite being in bed at a normal time. We even had a fight that night; It was 10:30, and we felt she must be desperately overtired from staying up late 3 nights in a row. She insisted she didn’t feel tired at all, and declared she was going to ‘stay up all night’.
I walked her to her room, tucked her in, and told her if I heard one more peep from her, there was going to be trouble.
She was asleep in minutes.
Half an hour later, I was getting ready for bed. I was in the bathroom brushing my teeth, when I thought I heard a strange sound coming from her room. I dropped my toothbrush and headed for her room. As I got closer, it sounded to me like she was throwing up…I ran.
My daughter, my perfect little never-sick-a-day-in-her-life little girl, was laying on her bed, eyes rolling back in her head, and she appeared to be choking. She was gagging and making terrible noises. There was drool coming out the side of her mouth, and when I yelled at her, there was no response. I screamed for my husband, and I’ve never seen him move so fast. I was pounding on her back, and he was shaking her, yelling at her to wake up.
I thought my baby was dying right in front of me.
My first thought was to call 911, but I knew that no one could survive 20 minutes of this (or however long it took to get an ambulance there).
My husband slapped her, and suddenly, there was quiet. Her face relaxed, and she appeared to be ‘waking up’. We were frantically asking her questions:
“Are you OK?”
“Can you hear us?”
“Does anything hurt?”
She remained pretty out of it for about a minute. She kind of looked at us, but she wasn’t really able to respond. After a minute, she was finally able to talk. She couldn’t remember what happened. The only thing she remembered was her Dad slapping her.
But she saw our faces, heard the fear in our voices, and saw us shaking. She was terrified.
I won’t go into the details of the weeks since that night, except to say that she had one more seizure since that night (the very next night), has had bloodwork, doctors appointments, a referral to a pediatric neurologist, and a sleep-deprived EEG.
It’s amazing how your child can be perfectly healthy one day, and receive a likely diagnosis of Epilepsy the next.
I’m sharing this all with you for 3 reasons:
1. PLEASE, if you’ve been giving your child melatonin, stop today, and do your research. When I googled ‘melotanin and kids’ a few months ago, I found 3 credible resources (some of them I had to really hunt for) suggesting a link between seizures and melatonin. 3 months later, there are many more websites pointing to this link.
2. If your child says they don’t ‘feel’ tired, but your gut tells you they ARE tired, go with your gut, and do everything in your power to help them sleep.
When Aliya had her sleep-deprived EEG recently, she needed to stay up all night the night before the test. After 2 hours of sleep in a 24 hour period, she claimed she ‘wasn’t tired and didn’t need a nap’.
Every night since the seizure, I have laid down with her to go to sleep. Many times she claims to not be tired. Every single night I’ve laid with her and insisted she lay still for 15 minutes, she’s fallen asleep, sometimes in as little as 2 minutes.
This leads me to believe that some children either don’t recognize their tired cues, or perhaps don’t even experience tired cues at all.
2. If your child, especially your 1 year old + child is consistently having poor, interrupted sleeps, and is obviously sleep-deprived, talk to your doctor and to a respected sleep consultant who has experience with kids.
I’m not saying every child (or even most) who are sleep-deprived are going to have seizures.
But if your child is prone to seizures (and you can’t know this until they actually have one, or else if a family member has epilepsy), it’s imperative they get enough sleep. You also need to know the melatonin reduces the seizure-threshold in children.
“There is an inherent relationship between sleep and epilepsy. Sleep activates the electrical charges in the brain that result in seizures and seizures are timed according to the sleep wake cycle. For some people, seizures occur exclusively during sleep. This is especially true for a particular type of epilepsy known as benign focal epilepsy of childhood, also known as Rolandic epilepsy. When seizures occur during sleep, they may cause awakenings that are sometimes confused with insomnia. Epilepsy patients are often unaware of the seizures that occur while they sleep. They may suffer for years from daytime fatigue and concentration problems without ever knowing why.” - National Sleep Foundation
*Update, 02/15/2013: I thought I should give an update as it has now been about 6 months since I wrote this post. Our daughter has had several seizures since this time.
We haven’t given her melatonin since this post was written, however each of the times she’s had seizures since (with the exception of one), it has seemed to be related to lack of sleep. 2 of these times were when she had awakened in the middle of the night because of sickness (cold/flu). Each time she fell back asleep and then had a seizure 30 minutes in. We believe the seizures were due to poor sleep because of sickness.
After meeting with a pediatrician specializing in neurology, and after doing a sleep-deprived EEG, our daughter was diagnosed with Benign Rolandic Epilepsy. As mentioned above, BRE can be related to sleep issues, so we work hard at making sure she is in bed at a decent hour, and we do whatever it takes to help her fall asleep (including laying down with her until she’s asleep).
With her doctor’s blessing we decided to continue working at building good sleep habits, and see if this could take care of the seizures. Unfortunately, she had another particularly bad seizure, and this on a night when we couldn’t connect it to any sleep-related issues. At this point it was decided she would go on an anti-seizure medication, and she has now been seizure-free for just over 3 months, with very few side effects from the medication.
The good news about BRE is that it’s a developmental form of Epilepsy, and she will outgrow it, likely by her early teen years. We are also very thankful that the seizures, while terrifying for all of us, are not harmful.
In the meantime, we will continue to work at making sure she gets enough sleep. Even now, she rarely feels tired, and would likely run on no more than 8 hours sleep per day if we let her. Many nights she’ll insist she feels wide awake, but after laying down with her, she’s out in 1-2 minutes.
This whole situation has reminded me of the importance of making sure our little ones get the rest they so desperately need. It’s up to us as parents to know how much sleep our kids need, and ensure they’re getting it, even if they don’t always act or feel tired!
*Update, 05/06/2013: After receiving a number of comments this evening (which I deleted) in which I was referred to as ‘grossly negligent’, and an ‘idiot’, I wanted to clarify my intentions behind this post.
Melatonin did not cause my daughter’s epilepsy. This was obviously something she was predisposed to, and the reason why she began having seizures is unknown.
However, research is suggesting that long-term use of melotonin in children may reduce the seizure threshold in children.
If you’re going to give your child melotonin, please do your due diligence and speak with your doctor. I would also recommend mentioning the latest research into seizures and melatonin, as some physicians are simply not aware.
I’m not a doctor, and don’t claim to be one. I just urge you to do your own research, and have a discussion about your doctor about it.
With our doctor’s blessing, we gave our daughter melatonin for several years. We will never know if the melatonin contributed to the seizures starting. However the fact that they started while she was on melatonin, and happened within 30 minutes of taking it, does give us reason to pause.
Sometimes melotonin is needed in order to combat serious sleep problems, particularly in children with autism. I would never suggest withholding something that could help in cases where sleep problems are severe, or where a knowledgable doctor has recommended it.
Do your research, talk to your health care professional, and then do what’s right for you and your family.