How I Advocated for Delayed Allergy Testing and Found the Right Doctor
As a mom navigating feeding and allergy challenges with my children, I’ve faced more than my fair share of medical frustrations. It’s easy to feel dismissed or unheard when test results come back negative, yet the symptoms persist. But today, I want to share a success story—one about persistence, advocating for my child, and finally finding a doctor who listens and partners with me which led me to delayed allergy testing and answers. This journey wasn’t easy, but it’s a reminder that your advocacy matters.
The Turning Point: Learning About Delayed Allergy Testing
Like many parents, I assumed that prick tests and blood work were the end-all-be-all of allergy testing. When those came back negative, I felt stuck. My child still experienced troubling symptoms—eczema, digestive discomfort, and behavioral changes—but I was told it wasn’t allergy-related. We had multiple allergy tests done through our regular providers at big name hospitals with all of the routine routes. We did multiple rounds of blood work allergy testing, and the more traditional “prick test” where they put the allergen and control on the skin and come back in 15 -30 minutes to see if there was a reaction. Overall, they all came back negative. We consistently heard from doctors that “allergy tests for kids under the age of two dont work, or are unreliable” but also, heard, “well, they are not allergic”. And, we knew that was not the case. Something for sure was going on.
Then I discovered something life-changing: delayed cell-mediated allergies, or sometimes referred to as a Type IV Hypersensitivity. Unlike IgE-mediated allergies, which cause immediate reactions like hives or swelling, delayed allergies can take hours or even days to show up. These can be triggered by foods, environmental factors, or even metals and chemicals. They require a different type of testing: patch testing. It all started to click into place. Of course the allergy tests would come back negative if our child’s reaction was delayed.
[This is how my babies skin and diapers looked when I was getting negative allergy tests back from the doctors. I was in the hospital for labored breathing, and snoring, throwing up, and skin reactions like the last picture. I knew that something was not right and am SO thankful that I had an amazing Internationally Board Certified Lactation Consultant, IBCLC, that listened to me and knew I was right. She is the one that pointed me in the direction of our now trusted Allergy and Immunonolgy Specialist and got us on the waitlist for patients. ]
What Is Delayed Allergy Testing?
Delayed allergy testing focuses on identifying these slower allergic responses. A patch test involves placing small amounts of potential allergens on the skin (usually on the back) and observing the reaction over 48-72 hours. This test can uncover hidden sensitivities that might be missed by traditional tests.
For us, discovering delayed allergy testing was a breakthrough. It explained symptoms that had previously been dismissed and gave us a clearer path forward. But getting to this point wasn’t straightforward.
Steps I Took to Advocate for My Child
Here’s what helped me get the answers we needed:
- Document Everything I kept a detailed journal of my child’s symptoms, noting what they ate (and I ate, since I was breastfeeding), environmental exposures, and how their body reacted. I kept a folder on my iphone of all of the images (like the ones above) of the visual symptoms, and had audio files of the sounds of his snoring and breathing. This gave our doctor a clearer picture of what was happening.
- Research and Educate Myself When traditional allergy tests didn’t align with my child’s symptoms, I started researching alternative testing methods, and asking around to people in the industry that I knew and trusted. In this case, it was my IBCLC that recommended this specific specialist, and got us into to see her. That’s how I learned about delayed cell-mediated allergies and patch testing.
- Ask the Right Questions During doctor appointments, I was specific about my concerns, had my detailed notes, images, and audio files, and asked directly about patch testing. If a doctor wasn’t familiar with it or dismissed my concerns, I requested referrals to specialists.
- Be Persistent Advocacy is exhausting, but it’s worth it. I learned to stand firm, even when I felt dismissed, and to keep pushing for answers until I found the right partner in my child’s care. Four years after this initial test, I was back at our allergy office after our school would no longer provide the allergy friendly foods without updated documentation.
Finding the Right Doctor
After countless appointments, I finally found a physician who listened. They didn’t just hear my words; they partnered with me to uncover the root cause of my child’s symptoms. The patch testing they recommended uncovered sensitivities we’d never considered and allowed us to make meaningful changes in our child’s care.
Having a doctor who values your voice as a parent is invaluable. It reminded me that while the road to answers can be long, the right support can make all the difference.
My Message to You
If your child has persistent symptoms but standard allergy tests come back negative, don’t give up. Here are a few key steps you can take:
- Ask about delayed allergy testing (included cell mediated) and patch tests.
- Document symptoms meticulously to help paint a full picture.
- Be your child’s advocate—your voice matters.
You don’t have to navigate this alone. My journey has taught me that persistence and advocacy can lead to breakthroughs. If you’re feeling stuck, start by exploring resources like my free quiz to help uncover potential causes of your child’s feeding and allergy issues. Together, we can find answers.
Let’s Connect!
Have you ever experienced challenges with allergy testing? Share your story in the comments below or connect with me on social media. You’re not alone in this journey, and I’m here to help.
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As always, you can contact me directly if you need additional support.
Let’s build this village together—one mama at a time.
