RARE Parenting: Handling the Common and the Medically Related Tantrum

All children act out. But when dealing with a child experiencing life with a chronic illness or debilitating disease, it can be hard to tell the difference between what’s a illness-induced tantrum, and what’s an age-appropriate, every-day behavioral problem.

I know this struggle personally dealing with my own children who have CAID. The inflammation from the disease can cause havoc for the whole body. However, my boys are also regular young boys—who get into fights, arguments and trouble—just like any other boy would.

The constant poking, probing, appointments, over night stays in unfamiliar hospital rooms, interactions being only with family, nurses and doctors—it would be a lot for any adult to get a handle on, but for children the stress is truly amplified.

So, what can we, as parents and caregivers, do when our sick child acts out with heightened expressions in what most parents would call a “meltdown?” Speaking as an educator as well as a parent I can suggest a few things if you are experiencing this behavior.

Check For Obvious Medical Complications

If your child is experiencing a severe side-effect from a medication, exhaustion from ongoing treatment, unmanageable pain or discomfort—these are reason enough for them to have a meltdown. In this case it is better to try and distract the child and bring them back to a place of calm and assurance that the pain/discomfort will be remedied soon.

Retrace Your Steps

Try to think of what might have happened earlier that day or the day before. Was there something new in your routine. An unfamiliar hospital or doctor? A new medicine? Did your child return to school? Could there have been an incident with bullying. It’s important to talk with your child and try to see why the behavior is occurring.

Record

Write down how many times these tantrums occur. How long do they last? Are they related to the effect of a medication or treatment? Are they fear-related? Are they the result of confusion, misunderstanding or anxiety? Keep a journal to see if changes in medication, diet, or location are the trigger for your child.

It may be helpful to film your child (although one of the toughest things to do) while having a “Disease Related Meltdown (D.R.M.)” This will help the doctors see if anything neurological is going on, in which case you can then help your child by getting the appropriate neurological tests and treatments. Even if you and your doctor mutually conclude that this is not medically related, it may still be a good idea to keep a journal to see and understand the pattern.

Using Comforting Techniques to Soothe Your Child

A few suggestions including sitting eye-to-eye with your child, holding and rocking them, playing calming music, speaking in a soft voice, allowing the child to express themselves through art or journaling.

Although I am used to my children’s disease related meltdowns, I know that they will always be emotionally draining for me. Any mother would want to ease their child’s pain and would struggle to control their own sadness and helplessness when it comes to watching their baby react to such extreme symptoms. We need to comfort them, but we also need to remind them that they are in control of how they react to their symptoms. Letting them know that there are ways to work through the pain and that you will be beside them each step of the way is the best way to get the situation in hand.

Teaching them to push through is a fine balance. We want our children to learn their own limits as they get older. However, with some conditions we need to be careful how hard they “push” themselves. Not only physically, but mentally. If we push our children too hard to work through the pain or take the “mind over matter approach” (which clearly these diseases aren’t all mind over matter) are we eventually leading them to become possibly numb by adulthood? Feeling pain, the normal pain is needed. Understanding the emotions they feel with the pain is upon them and helping them to manage it is our responsibility.

We have all been that mother, dropping their sick child off at school, our hearts feeling like they’re being crushed. I have to call and ask the nurse to help him out of the car. Letting her take him in as his brother carries his bag and he’s crying “mommy please don’t leave, I’m in pain!”

I couldn’t make eye contact but I said, “you’ll be okay, baby,” as I get in my car.

When he is finally on the other side of those school’s front doors, I hold my steering wheel and cry.

He stayed at least half a day, which was great.. The next day he was not in as much pain and he was in the car, ready to go, by school time.

Navigating the emotionally complex road of rare disease and the general pangs of growing up is never going to be fillled with entirely clear paths. Sometimes you’ll be ripping your way through the brush, other times lost in open fields with no one to ask for directions. While the disease may not always improve over time, your intuition and fortitude will.