Too many questions, too few answers about my daughter’s outbursts

My 10-year-old daughter had an absolute meltdown when it came time to leave a family birthday party the other day. I tried to bribe her. I got down on the floor beside her to reason with her. I reminded her that there could be consequences if she didn’t listen to me. I even threatened to take away her screen time for the day, which is a big deal for her.

It all fell flat.

In the end, I had to ask my much stronger brother to scoop Avery off the floor and carry her kicking and screaming to my car. It took the rest of the day for her to fully recover, and she spent most of the evening cycling between tears, outbursts, and apologizing.

By the time my other kids were 10, they knew better than to behave like this, but Avery is not like my other kids. Avery has a rare, catastrophic, and debilitating form of epilepsy called Dravet syndrome. This diagnosis — paired with other diagnoses of developmental disability, speech delay, attention-deficit/hyperactivity disorder, and tendencies that align with autism — can result in some very difficult moments. While each diagnosis is separate, many of them seem to be common for those diagnosed with Dravet syndrome.

Wishing for answers

We don’t deal with out-of-control behaviors every day, but they do happen two to three times a month. Sometimes, they occur more frequently, sometimes less. When they happen, I’m left struggling for several reasons.

For one thing, these behaviors are often embarrassing, especially if they take place in public. I am certain my child is being judged, and her behavior and my parenting skills are too. Before I learned better, I likely would have judged, too. Her outbursts can seem absolutely out of hand.

Avery’s behaviors can be extremely inconvenient and, to deal with them, I have had to leave functions early, cancel plans, and abandon full carts of groceries in the supermarket.

When these behaviors occur, my first thought is always, “What is going on with her? Is her brain overstimulated? Is she struggling with seizure activity? Is there something more going on in her brain and body than what I am witnessing?” Sometimes the answer is obvious, but other times it’s so hard to know. Sometimes, Avery was being overstimulated, and that would result in a status seizure, so I would try to move past the behavior however I could.

But other times, I often end up wondering if my child is just being a total brat, if her behavior has nothing to do with her brain misfiring. Is she just misbehaving? Is this tantrum something that is totally within her control? And if it is, how do I set better boundaries for a child who processes things so much differently than my other children?

I wish I had the answers to all of these questions, but I don’t. All I know is that Avery’s behavior flare-ups are a very real problem. When they happen, they do not present as a typical tantrum; rather, they seem absolutely out of control, as if nothing can be done to avoid them.

I am doing the best I can to deal with these behaviors, and that is all I can do.

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Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.