Saturday one of my substituted items in my grocery pickup order was Keebler mint cookies in place of Great Value mint cookies.  Free upgrade, right?!  Unfortunately not in this house thanks to food allergies.  My oldest son Dominic loves to have cookies as a treat after dinner, but he can’t safely eat the Keebler brand because their chocolate contains milk, one of his many allergens. Thankfully, we have some other cookies left from last week that he can have, so he won’t have to go without a sweet treat, but this is one of the challenges we face.  Three years ago, food allergies were very unfamiliar territory for us, but today they’re just part of life. It’s funny how quickly things can change, really, when you’re faced with circumstances out of your control.  As I was pondering these things, I thought maybe it would be helpful to someone if I answered some of the most common questions we’re asked.

How did you know your child has food allergies?

Throughout his infancy, we suspected that Dominic had food allergies.  He was a very fussy baby, and giving up dairy while I was breastfeeding helped, but didn’t completely solve his problems.  My gut told me that something in my diet was contributing to his discomfort, but I just couldn’t pinpoint it. We switched him to a hypoallergenic formula which definitely helped him, but that was not the end. He then reacted the first time he ate eggs at around 10 months old, and he would get hives, frequently, seemingly at random (we think maybe it was when David or I ate nuts, which we used to snack on often).  At 1, his doctor suggested we try milk (since many kids outgrow a dairy intolerance by this age), and we did.  I remember how proud I was when he finished a bottle of milk, and how disappointed I was when he vomited it up.  We tried a few times in case he just ate too much/too fast (#momfail), but that was not the problem.  Dominic was 13 months old when he was tested (via blood test) for food allergies to milk, eggs, peanuts and tree nuts, and it wasn’t a big surprise at that point that he was positive for all of these.

Will he outgrow his allergies?

The short answer is that we don’t know. This was certainly our first thought and hope when he was diagnosed. His allergist, though, only gave him about a 10% chance of outgrowing them because the numbers he was starting with were so high. He has been retested annually and in December was still highly positive for all of the allergens. His numbers for eggs seem to be coming down steadily, but they are still very high, and his numbers for milk are his lowest, but they aren’t really moving. From my google research, I’m still hopeful he might outgrow the milk allergy (and maybe egg), but only time will tell. His numbers for most nuts are steady or increasing, so I don’t expect he’ll outgrow those.

Where did the allergies come from?

We don’t know this either.  I’m always very frustrated when I see posts or memes about people “causing” allergies with too much hand sanitizer or picky eating or whatever.  Neither David or I have food allergies or intolerances of any kind.  We have an indoor dog and spend a lot of time outside.  Dominic was exposed to ALL the foods while I was pregnant, as well as while breastfeeding (Seriously – I was so hungry, and I didn’t give up dairy until he was 2.5 or 3 months old).  One of David’s sisters and one of my cousins do have some allergies, so it’s not unheard of in our family, but it’s definitely not common or something we expected. Also, our younger son James does not seem to have any allergies.  I believe it’s just an unfortunate “luck” of the draw.

What will happen if he eats his allergens?

One of the scariest things about allergies is that each reaction can be different than the next.  These are not intolerances or things that will just give him a tummy ache.  Dominic has IgE mediated allergies, meaning his immune system will respond when his allergens are ingested. We feel really fortunate that he has never had a full anaphylactic reaction; however, he has only ingested small quantities of his allergens, and his numbers are so high that he is absolutely at risk for this type of reaction. His first bite of eggs resulted in hives around his mouth as well as on his arms and legs.  At age 1, milk made him vomit. About 8 months ago, he took one drink from James’ milk cup, and he got a rash on his chest and coughed a few times. When we tried baked egg a couple of years ago (at his doctor’s suggestion), he got a rash on his legs about an hour after eating a few bites of banana bread.  Based on these experiences, we don’t think he’s likely to have anaphylaxis from trace amounts of anything (which his allergist agrees with), so we generally don’t worry about “may contain” warnings on packaging, but we’re pretty careful about cross contamination at home and at restaurants (i.e., no shared utensils or safe foods off the same plate as something unsafe).

Can he be out on the farm?

Yes, and he loves the cows and calves. We’re very open and honest with him about what’s safe and what’s not, and he’s pretty cautious.  There’s not a lot of milk outside the pipeline and bulk storage tank, but he knows to avoid the rinse water (which contains milk rinsed out of the pipeline) and to not touch calves mouths after they’ve been fed milk replacer. We have actually avoided certain feed ingredients (like expired peanut M&Ms) due to his allergies, too. He does spend time in the milk barn and around the young calves, though, and we’ve not yet had an incident on the farm (*knock on ALL the wood*).  Of course, we all wash up really well as soon as we come inside to minimize his risk.

How do you keep him safe?

Mostly, we read a lot of labels. We are thankful that his allergens are all in the “Top 8”, meaning they legally have to be specifically identified on labels in the United States. We read every label every time because sometimes products from different manufacturers or even different facilities from the same manufacturer can have different ingredients. We send his food to daycare. We cook at home a lot.  (Side note: if you’re looking for ideas – I’ve gone back to old recipes on this blog and updated them with modifications/substitutions/omissions we now use). When we do go out, we read menus ahead of time and overcommunicate with wait staff and then still watch his plate and his behavior closely. We also ask a ton of questions or avoid most foods at family and community meals, and I almost always have a few safe snacks in my purse or diaper bag. 

We also talk to him.  He’s getting old enough now to start advocating for himself some.  He knows what he’s allergic to and to ask whether things are safe for him to eat.  He’s not quite ready to shoulder this responsibility alone (at age 3), but he knows enough that he told his dad immediately when he accidentally drank milk 8 months ago.  I’m fairly confident he’ll be able to keep himself safe as he gains more independence and goes to school, etc. (not that I won’t worry like crazy).  

Of course as a last resort, we never leave home without his epinephrine and benedryl.  Thankfully, we’ve never needed the epinephrine, but we definitely don’t want to be caught in a situation where it is needed without it.  

If you ever have any other questions, please ask – David and I are an open book on this, and I’ve yet to hear a stupid question.  I personally feel like food allergies are really misunderstood, especially with all of the various fad diets and food choices that are made today (though we have those to thank for many of the safe products available for us, too…).  I think the more that our friends and family and society as a whole begin to understand food allergies, the safer Dominic will be in the future, and as a parent, that’s something I’m obviously advocating for!