Our Allergy Journey

We're Still a Food Allergy Family

We're Still a Food Allergy Family

The first couple of doses were simple enough. I brought organic whole milk. The nurses put the milk into tiny syringes. He sucked it down with ease. And then we waited. We watched for hives. We asked if he had any itching. We monitored for a cough. We waited for a reaction. Then, one came.

Mixed Feelings: Could This Be Our Last Allergy Test?

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A couple of weeks ago, my son had a blood test. He weirdly appreciates lab work. For him, it means “just one poke.” That’s because allergy tests have often meant multiple skin pricks on his little back.

This blood work was a follow-up — six months after our baked milk challenge. Last year, our allergist felt it was worthwhile to have him try baked milk but didn’t believe it was safe enough to have him try milk. This latest test would tell us if anything had changed in terms of his risk.

The results are in, and our allergist wants to do a dairy challenge. That challenge — where my son will drink real milk for the first time in increasing amounts — is coming up. And I am filled with mixed feelings.

We’ve been on this allergy journey for four years. I’ve known that the odds said he’d outgrow most of his allergies by age 5. And here we are — almost three months shy of his fifth birthday. Still, dietary restrictions have become such a big part of our identities, of our lives, that it’s hard to believe there’s a future where they don’t exist.

My leading emotion is hope, but there is indeed (as usual for moms, I think) a lot on my mind.

More Freedom and Choice

My hope is he will have more choices. But I fear those choices will be less healthy than the choices he’s had so far. In a lot of ways, food allergies have forced us to make good decisions. They are decisions that perhaps we would’ve made anyway. But it’s hard to imagine that my child would be almost 5 and not have ever tasted macaroni and cheese if not for an allergy. How do I ensure that mac and cheese stays out of our regular rotation? Of course, the answer is simple … I just don’t make it. But I understand the temptation that a lot of parents deal with.

My hope is that he will be able to eat whatever he wants. My fear is that he will eat whatever he wants. While it would be great to be able to sprinkle a little cheese on some broccoli, I also don’t want to open up a lot of unhealthy dinner options. Right now, he prefers grilled chicken and black beans to almost anything you could put in front of him. And while there are days I wish he would try more new flavors, I actually feel pretty good about his diet on the whole.


New Memories

My hope is that I will be able to teach him how to make homemade macaroni and cheese. That one night we’ll do a cheese tasting plate and allow him to explore the wonders of goat cheese and feta and Brie. That he and will I be able to experiment with different casseroles and we’ll make chocolate mousse and pudding and cream pies.

My fear is he will love them way too much.

Safe from Harm

My hope is we won’t have to carry the EpiPen anymore. But my fear is that he may actually be allergic to something he hasn’t had and we just don’t know it yet. My fear is that we will need that EpiPen. We’ve never needed it, thank God, but what if we do?

Above all, my hope is my husband and I won’t have to worry about whether the call from the school is about an allergic reaction and we won’t have to worry about his safety in the same way. But what I know — not just fear — is that there are an infinite number of other things I’ll worry about instead.


Education and Empowerment in Action

Education and Empowerment in Action

As an allergy parent, one of the things you worry about is how to teach your child about their allergies. How do you teach them what foods they can have and which they can’t? How do you teach them to ask questions and speak up for themselves? How do you teach them to be educated about food in general? And how do you do this when they’re not even 5 years old?

Our Allergy Journey: Serious Progress

Our allergy experience has changed immensely since our testing a few months ago. As an update, I'm sharing an email I wrote to my son (he has a Gmail account that we periodically send messages to). Here's the latest in our story.

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Conner,

More than three years ago, I scrambled up some eggs and tried to feed them to you. I didn't add cheese because a few weeks prior, Greek yogurt had made you break out in hives, so I wanted to be safe and not reintroduce dairy for a while. 

I was excited for you to try eggs. I wanted you to get more protein and nutrients, and you were still so new to table food that meat was a struggle. (Honestly, a lot of foods were a struggle, but I recall meat being especially challenging for you.) Eggs, I thought, would be good for you. 

Within seconds, hives appeared. I couldn't believe it. Were you allergic to eggs? Really? I had no idea that eggs were such a common allergen. (I've learned a lot in the years since.)

The next morning, we happened to have a doctor's appointment for a follow-up to an ear infection, and I described your symptoms after eating eggs and yogurt and asked about food allergies. The doctor said we absolutely should test for food allergies. 

So, I took you — just 10 months old — to the lab for a blood draw. When the results came back a few days later, we were told you were likely highly allergic to eggs and dairy, yes, but also soy, nuts and peanuts. They had us come in the meet with Dr. C, who prescribed an EpiPen and taught us how to use it. He also told me that if I was going to continue breastfeeding, I'd need to avoid all the foods that you were allergic to as well. Then, they referred us to an allergist for further testing.

The allergist did follow-up skin testing, which confirmed these allergies. So, every year just before your birthday, we go back for skin testing, and a couple of times now, we've done follow-up blood work. When we saw the allergist in May, we were testing for dairy and egg. Both were positive, but improving — and improving enough that they recommended blood work. The results of that test encouraged the allergist to recommend a baked milk challenge, and earlier this summer, we went in for an oral food challenge, where you ate muffins with baked milk ... and were given the all clear! (They don't have that same confidence for cheese or other dairy, so we'll do blood work again in six months.)

After the progress with baked milk and based on your blood test results, the allergist felt we should do an oral food challenge for eggs. Yesterday, we returned to the allergist's office with fresh scrambled eggs in my purse. I was nervous, but hopeful.

The nurse came in and gave you .1 grams of egg. No problem. Then, .2 grams, then .4 grams and .8 grams. You were good. No rashes, no hives, no tingling lips, no troubles at all. Soon, she was bringing in huge bites — double doses. You passed with flying colors!

Waiting for the egg challenge — optimistic!

Waiting for the egg challenge — optimistic!

You had some reservations about the texture of scrambled eggs. And frankly, I don't blame you. But I was surprised you seemed to be OK with the taste. Of course, I offered you scrambled eggs this morning for breakfast, and you said, "Maybe Sunday." So, I guess you didn't exactly love them.

After your test, we had lunch and called Grandma and Grandpa to tell them the good news. Then, I took you to school. As we turned the corner to enter your classroom, Miss Shannon saw you and said, "Oh, this is good news." She knew that if you hadn't had a successful test, we probably wouldn't have come to school. 

She asked you what you ate that morning, and you so proudly said, "I ate eggs!" She gave you a big hug and said, "This opens up so many more possibilities for you!" 

Indeed it does, buddy. It means infinitely more options for breakfast, of course. But it also means the possibility of foods like meatballs and fresh pasta and fried rice. It also means more cakes and breads. 

A couple years ago, I tried to make a pumpkin "loaf" (it's a cake, really) for you, substituting for the eggs. Oh dear, it was so vile. I swore off most cakes for you until the day you could have eggs. I'm hoping we'll make that cake this weekend. And maybe homemade ravioli. Maybe some French toast or breakfast burritos. Whatever we make, it will be wonderful to be in the kitchen with you — and no matter which foods you like or don't like, I'm pretty confident you're going to love having more options as a result of no longer having this allergy.

When you were first diagnosed with food allergies, the allergist told us that 80 percent of kids outgrow their egg and dairy allergies by age 5. You're just nine months shy of 5. And I'm super optimistic that you're going to be among the 80 percent. 

You have no idea what a relief it is to your dad and me to know that your body no longer thinks it needs to react to this food as an enemy. Yesterday was a momentous day. 

I love you so much, buddy. 

Love,

Mom

Food Allergies, the End of Breastfeeding, and Mom Guilt 

To say we enjoyed an “extended” period of breastfeeding would be an understatement — at least by American standards anyway. I never thought I’d nurse so long. Breastfeeding was important to me, but I thought, “OK, six months, and we’re done.” ... It was a special thing we had. I tried to let him lead the weaning, but he clearly wasn’t going to. So after two years and nine months, I decided it was time.