I accidentally taught my daughter to ignore her HAE symptoms

The tickle around my uvula gave me pause. I knew the feeling almost immediately. And it couldn’t have been happening at a worse time.

There’s a strange phenomenon in my house when it comes to illness. Although we’ve reached a point where the flu isn’t passed around our house every flu season, there’s a specific respiratory illness that shows up at least twice a year.

While my husband, Paul, seems almost immune to it, it shows up first in one of the kids. If our youngest son gets it, it usually stays with him until he’s well and everyone is in the clear.

If our oldest daughter, whom we lovingly call Ladybug, gets it, we keep a close eye on her. On rare occasions, I have to give her a dose of Berinert (human C1 esterase inhibitor) because this particular illness can often trigger a flare of her hereditary angioedema (HAE). Yet, if she’s the first to get it, it stays with her until she’s well.

But if our youngest daughter gets this respiratory illness, not only will she pass it to someone else, she’ll pass it directly to me. This was one of those times.

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I had three events for which I was logistically responsible mere days away. And while the “tickle” was ringing alarm bells, signaling that an illness was imminent, I ignored it. Sure, I took vitamin C and drank plenty of water. I even sprayed my throat with a medicinal numbing spray to make the “tickle” go away, knowing deep down I was only masking it. I felt obligated to see the events I was responsible for through, and I honestly love what I do.

Unfortunately, my pseudo-remedies did nothing for what I had caught. There’s a very specific regimen that my pulmonologist prescribes, which includes rest, and I kept putting it off until everything I wanted to do was over.

As soon as it was all over, I crashed. And what could’ve been a few days of medicine and work turned into four days home from work. The entire situation might have been somewhat avoidable if I’d listened to what my body was telling me.

Sometimes, I realize that my husband and I are raising my mini-me.

‘You know you do the same thing’

When Ladybug was diagnosed with HAE, one of the most frustrating things for me was watching her ignore prodromes or gloss over obvious symptoms. Her fatigue may be palpable, the raised rash on her skin may be visible, and she may even complain of tingling in her hands and face. But if I’m not paying attention, she’ll move right past all of those warning signs if it means she doesn’t have to miss school, dance, or something fun with her friends.

However, we often pay for it when she ignores her symptoms. Oftentimes, it leads to full flares that require multiple doses of Berinert or an eventual hospital stay.

“Ladybug,” I said after a particularly harrowing flare. “You can’t ignore your symptoms and then tell me about it later. It only makes things worse.”

“You know you do the same thing,” Paul gently told me later. He was absolutely correct.

I do my best to be an incredible caregiver to her. But as a mom, I realize I must show her that it’s OK to stop, say no, and sometimes cancel if her health is at stake.

I’m still working on being a good student. Maybe it’s a lesson Ladybug and I will learn together.

Note: Angioedema 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.