Primary Immune Deficiency Disease: Parenting a Child with PIDD

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This is day 10 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Jennifer Janes is guest posting, highlighting her daughter’s diagnosis.  

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I was going to be the cool, relaxed mom the second time around. I didn’t freak out every time a pacifier fell on the ground or my daughter picked up food off the floor at home and ate it (five-second rule, right?). I wasn’t as paranoid about dirt or germs in general, runny noses, random coughs and sneezes, and accidental sharing of sippy cups.

Then my younger daughter was diagnosed with a Primary Immune Deficiency Disease (PIDD). It took several years, but I knew something was wrong after she required sinus surgery for an antibiotic-resistant strep before she turned two years old. Some of the strange health problems were finally attributed to a PIDD shortly after she turned four years old. She does make antibodies, but her body simply can’t make enough to keep up with the demand.

She started immunoglobulin infusions when she was four years old. That was when it really hit me that there was a serious problem. I started reading more about PIDD and realized how dangerous it can be. Everything changed.

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I don’t keep my daughter from participating in group activities in public, but we now keep lots of hand sanitizer around. Both of my children know to keep their hands away from their faces, and as soon as we get into the car after an activity, we all wash our hands with hand sanitizer before we buckle our seat belts. We follow the recommendations to cough and sneeze into the crook of our elbows rather than our hands, and we encourage others to do the same. We get flu shots every year, but we can’t do the forms that contain live virus. Having family members shedding live virus would be dangerous to our daughter and would leave her open to actually getting the flu! (Despite the flu shot, she’s gotten the flu the past couple of years, but it has been a relatively mild case, thankfully. We continue to follow her immunologist’s recommendations to try to minimize the flu’s impact on her system.)

We take probiotics every day and are even more vigilant when stomach viruses make the rounds in our community. They hit my daughter particularly hard because of the combination of PIDD and GI issues and have landed us in the emergency room for a hospital admission more times than not.

My daughter struggles with oral thrush, sinus infections, and sometimes skin infections. Even with the infusions, she has a hard time avoiding these infections and has several a year. But I’ve seen what it’s like when she doesn’t get the infusions. We went without them for about a year while doing antibody response studies and getting those results. Her antibody levels steadily dropped, her lymph nodes began swelling and got sore, her lack of stamina and fatigue increased, her joints ached, she had chest pain, she got pale, the circles under her eyes got darker – and I watched the physical deterioration happen. It was heartbreaking.

I’m the “germaphobe” who wipes the grocery cart handle with an antibacterial wipe, who reminds children (even other people’s kids) to wash their hands after using the bathroom, who would rather people stay home when they’re sick. It’s not because I’m terrified of germs. It’s because I’ve spent too many hours in the emergency room, too many nights in the hospital, too many days sitting in surgery waiting rooms, too many weekday afternoons administering immunoglobulin infusions, too many visits to the lab to get immunoglobulin levels drawn. I’m “that” mom because I’m looking at the world through the lens of PIDD.

Jennifer Janes lives in Arkansas with her husband, two daughters, a few cats, and a couple of gerbils. She spends her days homeschooling her kids, writing in blue ink, writing, reading, crocheting, and enjoying time with friends and family. She shares about her faith, family, and parenting and homeschooling a child with special needs at jenniferajanes.com.