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5 Things I Want You To Know About Having an Immunocompromised Child

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The woman next to us lets out a big sneeze and doesn’t bother to cover her nose. I was in a bind because my daughter’s nurse was absent and my son had to be at his appointment. The very thought of those germs made me twitch. Luckily, we were able to move to a different area after a staff member who is familiar with our family saw the events unfold.

This is our life. My daughter is immunocompromised. In a nutshell it means that a person’s immune system is weakened or absent. A person who is immunocompromised are less capable of battling infections because of an immune response that is not properly functioning.

We aren’t alone. There are about 10 million people out there. That’s a pretty steep number.

Why are infections dangerous in immunocompromised patients?

The usual symptoms may be absent. Patients with weak immune systems may not show the classic signs of infection.

Also their systems may not respond quickly to infection. Patients with weak immune systems may have trouble clearing infections from their bodies. The infection may also move quickly. In the absence of infection-fighting white blood cells, the infection may rapidly progress from fever alone to sepsis and death. Not something you want to play around with. So here are a few things to keep in mind as we head full force into cold and flu season.

1. A little illness can become a big deal. That cold that you have, the stomach bug that only lasted 24 hours on your child, or even that little sniffle can become a really big deal. An immunocompromised person can’t fight those bugs off the way you or I can. When my daughter becomes infected, a simple cold can last well over a month. A stomach bug buys us a week in the hospital. A sniffle leads to another round of antibiotics. It’s not fun.

If you are sick the best thing you can do is stay home. I know it’s not easy and I can see you rolling your eyes at me. I worked at a job that demanded I come in with a stomach bug. What’s worse was it was a daycare! The assistant manager didn’t care that I was sick. She claimed there was no coverage. So I exposed lots of people. I’m well aware of the reality. So I started wearing masks when I was forced to come in ill (and I found a new job). So if staying at home isn’t an option, trying to quarantine yourself and taking extra safety precautions is your second best bet.

2. Don’t touch them! This one is important, too. I have been in grocery stores, libraries, waiting areas and lots of other places. People feel the need to lay hands on my child. I know she’s cute, but your germs are too big for her body. Plus it’s her body. She may not want you to touch her. At home we wash frequently before we touch her and we are her family. This helps her stay well.

3. Our families may have to do things differently to keep them well. When my son started school, my daughter’s medical team sent home a list to help keep her well. It was a long one. These things aren’t always fun for my son but he knows we have to do it. We also have to step up hand washing, cleaning, and there is a sign hanging on our front door that asks you to remove shoes and wash and sanitize your hands. Some days it gives me a headache, but these things matter.

4. We can’t always go to large gatherings and typical places. I’d love to go to every reunion, bounce place, and pizza party zone. But we can’t. Please don’t be offended if we can’t be there. We want to and we will miss everyone. But these places carry hidden dangers for our loved ones. We may need a smaller gathering or a different meeting place.

5. Don’t tell the person how bad you feel for them right to their faces. They probably feel bad enough that they are missing out. My daughter may not care, but I do. Having been able to take my son to places and have her miss out isn’t fun for me. Instead of listing all the stuff they are missing out on find way to include them! It may take a little more creativity on your part but it’s so worth it. One of the best memories I have is of a good friend bringing her child over here with a few party trinkets and some cake to have a second birthday party so my child could participate. It meant a lot.

I’m sure I could come up with more. You may even have ideas too, but this is a start. We can make things better for our loved ones who are immunocompromised and keep them healthy and thriving.

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Lead photo by Thinkstock Images

Originally published: January 23, 2017
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