My daughter has breath holding spells. If you’ve ever experienced one, you’ll know exactly what I’m talking about. Most people either have no idea what they are or they will say, “Oh yeah, my friend/brother/cousin used to have those.” When you think about breath-holding in children, an image like this might come to mind. A bratty child who wants her own way, threatening her own bodily harm to get what she wants.
Until it happened to Evelyn, I was one of those people who had no idea. I had heard of kids holding their breath during a “temper tantrum,” but had never seen it actually happen. A true breath holding spell looks nothing like this illustration. A quick youtube search will show you, but be warned, it’s very hard to watch.
She had her first breath holding spell when she was around 9 months old. My nephew was at our house one day and he was holding her on his lap. The cat jumped up right next to her onto the arm of the chair and it startled her. She started to cry, but then no sound came out. I watched her closely and she still didn’t take a breath. Eventually, I took her away from him and started to blow in her face. In a total state of panic, I tried giving her rescue breaths, not knowing what else to do. Eventually she did breathe and we both recovered. I thought it was a really scary fluke. But little did I know, it was just the beginning. We brought this up with our doctor and he assured us that it was a common condition and that she would grow out of it. However, he said it might get worse before it got better. She continued to have these spells on and off, maybe a few times a week. She eventually had some that were so scary we ended up taking her to the ER. She didn’t recover as quickly as she had in the past and she had seizure-like twitching. After two trips to the ER, our pediatrician referred us to a neurologist for an EEG. Fortunately, the EEG was clear and the neurologist assured us that these were just severe breath holding spells.
So, we’ve just learned to live with them. They tend to happen when she is tired, so we try to keep her on a consistent schedule and make sure that she is fed and well-rested. We’ve tried really hard not to walk on eggshells with her or indulge her to prevent them from happening. That hasn’t been too difficult because they tend to happen most often when she is suddenly frightened by something or when she gets hurt, NOT when she doesn’t get her own way.
This is a condition that is extremely misunderstood, in my opinion. Everything I have read about it states that the spells are involuntary. Our daughter’s neurologist even described the spells as being caused by lack of development in a part of the brain that will eventually catch up. She should outgrow this between her second and third year. At the same time, I hear doctors and others talk about the episodes in relation to temper tantrums, which gives the idea that the child is willfully holding her breath in order to show us all she means business. This point of view, quite frankly, really pisses me off. Even the name of this condition is misleading. “Breath holding” suggests that the child is holding her breath on purpose. Go ahead, try it for yourself. Are you able to hold your breath until passing out? For Evelyn, I can only imagine that it is extremely scary when she stops breathing. Because that’s what’s really happening here. Her body stops breathing and she has no control over it. It’s no wonder she is completely exhausted and inconsolable when it’s all over. Watching her have these spells feels a little like watching her suffocate every time it happens. It breaks my heart. Even though we are “used to them” now, it still tears my heart out to watch her struggle.
So what does a typical spell look like? Usually, it is triggered by something, a strong emotion (fear, pain, frustration). Evelyn will start to cry, but then her mouth remains open as she expels all the air in her lungs and no sound comes out. Her face remains frozen in the grimace of a strong cry and her body begins to stiffen and her skin starts to turn purplish, particularly around her lips. This is the part that seems to last a million years. I find myself thinking (and often saying), “breathe, just breathe.” Eventually, if she doesn’t breathe, her body will go limp, she will pass out, and she she will start to breathe on her own again. Breath comes back to her violently, she gasps for air and her eyes open wide, her pupils dilated. Sometimes, her arms and legs will spasm. It sometimes takes her awhile to “come back” to us. She looks around like she doesn’t know where she is or what is happening. When she finally does realize what has happened, she is usually inconsolable and exhausted. Sometimes she cries for a very long time and sometimes she falls asleep, depending on how tired she was prior to the episode.
When it comes to discipline, we don’t walk on eggshells to prevent her from having spells. She is a very normal almost two-year-old. She’s independent, stubborn, and prone to cry and scream when she doesn’t get her way, but the breath-holding rarely accompanies these tantrums. She usually has a spell when something startles her or she gets hurt, physically or emotionally (a friend takes something from her, for example).
The fact that doctors don’t really know the cause of the spells and that there is nothing to do to treat them makes me feel so helpless as a parent. There is nothing I can do to help my little girl except to provide a safe and loving, structured environment for her and to reassure her that she will be ok when they do occur. I hope that this condition will be better understood in the future and I hope that people will stop telling parents to ignore their child’s “bad” behavior. It’s possible to remain as neutral as possible during a spell and offer comfort during the aftermath, without encouraging negative behavior.
Does your child have breath-holding spells? How do you handle it?
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