I recently had a COVID test.
Thankfully, my immunity is strong.
I was not symptomatic and ultimately, not positive.
It was standard for a procedure I was having.
My test took place in the same hospital where we visited 29 times in the first 24 months of my oldest son’s life and it was very triggering.
RSV. Pneumonia.Weeks-long fevers of 107 degrees.
Hematologists. Immunologists. Pulmonologists.
That was just a fraction of what we experienced over those years.
My son gets healthier every day but, among his other conditions, he has low IgA. In other words, he lacks enough of a specific type of protein to fight many infections. IgA is found in mucous membranes, mainly in the respiratory and digestive tracts. It is also found in saliva, tears, and breast milk. A deficiency plays a part in asthma, allergies, and many other things. Researchers have also linked IgA deficiency to autoimmune health problems. These are health problems that cause your body’s immune system to attack your body by mistake.
In recognition of March as National Autoimmune Disease Awareness Month, I want to share our experience and encourage you to share yours. While it’s far from life-threatening his complications include asthma, regular digestive distress, regular visits to the hospital for manual bowel blockage extraction, frequent vomiting, ear and eye infections, and recurrent hospitalizations for pneumonia. These procedures are time-consuming, expensive, anxiety-provoking, and, let’s face it, messy. They also tend to make people, sometimes everyone in the family, pretty grumpy as it’s not fun to feel or be sick nearly all of the time.
As a first-time mama, it was terrifying to navigate these illnesses, procedures, and ultimately the diagnosis. I was tired of people dismissing my concerns. The number of times I heard “That’s just what it is to have a kid in daycare.” or “You just have to hold on until Kindergarten. He’ll be sick until then, but then he will be so healthy and all the kids that stayed home will be sick every day of elementary school. You will finally get a break!” “Have you thought about quitting your job?” My husband was never asked this question. I don’t want anybody’s kids to be chronically ill! Comments like these were well-intentioned and far from reassuring.
I was so scared he would be “sick” “forever.” I was scared I would lose my job while caring for him. I felt guilty–like I was doing something wrong. I felt frustrated and exhausted. I was not able to eat or sleep. I weighed less than 100 pounds. As he got sicker, so did I. We continuously switched daycares to find the safest, cleanest environment. We sold our house and moved to be closer to the best environment. We switched jobs to better pay for his treatments and school.
As I left the hospital that morning, I had a flood of emotions.
I was so thankful that we have been able to stay home and healthy since February 2020.
I was so thankful that I am not a first-time mama navigating all of the above in 2021.
I was so thankful for the people that loved and supported me as I navigated all of that and continue to.
Reminded of this challenging time and thankful we have learned to manage, I am determined for others experiencing this, or any chronic health issue, to be heard and seen. If you and your little one are struggling:
- Trust your gut regardless of what friends, family, and even professionals may say. No one knows your child better than you. They are subject area experts but we have our feet on the ground. We see our children every day, after every meal, through every night. We have instincts for a reason. Put them to good use.
- Keep a binder of records. With modern medicine and insurance policies, continuity of care can be a real challenge. Once I started this and, like a crazy lady, took it to every visit, referenced it, and insisted that the provider in front of me do the same, we started making progress.
- Create a comprehensive treatment plan. One thing at a time, evaluate effectiveness and iterate to make improvements. It can be really overwhelming to process and prioritize all the recommendations, professional and otherwise, you receive. Testing changes–diet, medications, chiropractic care–one at a time–has helped us determine what is most effective and plan accordingly as my son changes and grows.
- Take up as much time and space as you need. It was easy for me to feel hypervigilant, rushed, pressured, and shamed into getting those visits, even to specialists, complete in the 15-minute window the office prefers. Once I moved the pressure off of myself to “wrap it up” and on to them to truly listen, the game changed.
- Talk to anyone who will listen. Listen to anyone who will talk. Patients and caregivers often struggle to receive a diagnosis of autoimmune disease. It can take years because the symptoms can be nonspecific, and it can be very challenging to say whether or not a patient definitively has an autoimmune disease. This lost time can amount to a long, costly, and often frustrating journey. In our case, it took over four years.
How can you successfully advocate for your family’s health?
What have you learned on your health journey?
How can I help?