Something I hadn’t considered worrying about

… until now.

I have a terrible, rare allergy that causes massive, painful and itchy hives. When I was first seeking diagnosis for this allergy, I had an allergy skin patch test. The allergist was baffled by the results: a hive so large that it extended beyond the small square where the substance had been applied (I’m not even joking. Every member of the staff came into the exam room to stare in amazement at the size of my reaction). My doctor had tested patients for this substance throughout his entire career and I was the first to react to it. That substance, my literal Kryptonite, is called tocopherol.

From what my non-scientific brain now understands, tocopherol is a synthetic form of vitamin E which seems to be found in a wide array of health and beauty products, especially the ones that are more emollient in nature.

Upon diagnosis, I quite literally went through the fine print list of ingredients for every single product of our house, and trashed anything that contained tocopherol. I then had to go through the fine print list of ingredients on potential replacement products in every single aisle of my local drug store. In preparation for Falco, I had to sift through the fine print list of ingredients for every external-use baby product we were considering, including diaper creams, baby shampoo/washes, even disposable baby wipes. It has been absolute hell.

My allergy is so severe that I react to OTHER people’s use of products that contain tocopherol. A brief hug at a social gathering results in a minimum of a week’s worth of a miserable rash on my neck. Since use of this ingredient is so widespread in beauty products and my allergic reactions were becoming worse and more frequent, I recently sent an email to a group of friends with whom K and I regularly socialize, to say, “Hey, I love you and I love showing you how much I love you, but for now, I basically can’t touch you.” High fives and fist bumps would have to suffice. This level of isolation just added to my misery.

Today, a dear friend who is a new dad was giving me some advice related to lessons he recently learned. He knows of my tocopherol plight and said that he saw that this ingredient was listed on the baby formula that his little one eats. I panicked, frantically sifting through the internet for lists of ingredients on major labels of baby formula. (I’d like to send a big fuck you to Abbott, the makers of Similac, who assume that parents and caregivers wouldn’t want to access nutritional information about their products. I had to click on a separate link for medical professionals in order to uncover such information. Total. Bullshit.) Tocopherol is an ingredient in every formula brand I searched.

I only react to tocopherol when it touches my skin, but I’m sure that won’t happen very frequently when I’m mixing bottles to give every two hours, washing bottles, being spit up upon, cleaning up spit-up, washing clothes with spit-up on it, maybe even cleaning baby poop… ACK! I’m trying to stay calm and not freak out too much until I speak with my kickass allergist, with whom I now have an appointment. I can’t keep myself from worrying about the very real possibility that I will be allergic to our precious little one.

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12 thoughts on “Something I hadn’t considered worrying about

  1. Yipes! that is one SERIOUS allergy! Is there anything you can take? or do allergy shots? My mother in law did the allergy testing about a year ago and was allergic to 61 out of the 65 things they tested her for. They had to give her an epi pen injection 30 minutes after the testing because she was reacting so badly. The previous year she’d been sick all the time, on antibiotics all the time (from sinus infections and bronchitis). After several months of allergy shots, she hasn’t been sick at all this year and seems to be doing so much better!
    But I don’t know if that would apply to something that you are SUPER super allergic to. Scary!
    I am sure you will find a way around it……. you’ll make it work!

  2. We have friends who did home-made goats milk formula for their kid. I don’t know details on why or how — I just know they made it themselves and the kid was great. I can put you in touch with them if that seems like info that would be useful.

  3. That sounds frustrating and scary. For what it’s worth, I don’t remember coming into contact with formula itself that often. Even though ours was a summer baby, I generally wore sleeves and used a heavy diaper for a burp cloth. Washing bottles was the place where I came into skin to skin contact and maybe that could be avoided with rubber gloves? Outside of that, drool was the biggest offender and since I think drool is gross 🙂 I kept clothes for wiping everywhere.

  4. Holy Jeebus that is quite the allergy! I can help locate some homemade formula recipes if you are interested. I belong to a pretty awesome natural birthing and parenting group on Facebook. Also, if you have not looked into donated breast milk, I would be willing to email with you about that.

  5. Boo 😦 I thought of homemade formula or donated breast milk as well as two possible options. Or having those in your back pocket if the formula turns into an issue… though it sounds like it very well might be considering your history :-/

  6. Have you heard back from your doctor, or thought about what to do? I’d hate to think that Falco’s formula would give you such a reaction! (This is my way of asking for an update)

  7. Pingback: Snappis and prefolds and wet bags, oh my! | The Falco Project

  8. Pingback: Allergy update | The Falco Project

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