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10 things I learned from Squid’s dairy allergy

There are some things that I’ve learned since my son’s diagnosis with food allergies (particularly dairy).  I have a feeling I’m going to need to continually add to this post.

1. Nobody Understands
Seriously.  I’ve noticed that even within our family, unless they are involved in Squid’s day-to-day life, they just don’t get it (with a few exceptions).  “What do you mean I cant bring my own food into your house?  Your kid will be fine, right?”   Sorry, not taking that chance.  If you don’t understand, at least be respectful of the allergy parent’s decisions.

2. Gluten-free Spam
I can not tell you how many people (outside of my social circle) have sent me suggestions for products or recipes that are gluten-free.  That’s all fine and dandy but it still contains DAIRY!  We don’t have a wheat issue so I’m not too concerned about wheat/gluten but thanks for thinking of us.

3. What do you eat?!
Every time Squid adds a new allergen to his ever growing list, people say “Oh that poor baby.  What do you eat?!”  Umm…. lots of things.  Sub out the dairy and there ya go, same as everyone else.  We were already avoiding egg and shellfish so it was no big deal to cut them out completely when he was officially diagnosed.  I don’t feel like he’s “that poor baby.” We learn to adapt for our child and it’s no big deal for us.  Just a new part of our life.

4. Cutting out dairy doesn’t mean cutting out “the good stuff”
I absolutely love that there is a substitution for most dairy items!  Milk, ice cream, butter, yogurt, whipped cream, cream cheese!  I know I’m missing some but YUM!  I also love that if there isn’t a substitute to be found, one can be created.  The only thing I feel like we actually gave up was cheese.  Still looking for a good sub because Daiya just doesn’t cut it for me and most of the others have casein protein.

5. Dairy is EVERYWHERE!
Do some manufacturers look at their product and say, “Hmm, what is this missing?  Oh, I know, DAIRY!”  Thank God for multiple brands!

6. Heightened awareness
I see food completely different now.  when any kid walks in with a food item in his hand, my allergy mom radar starts going off.  I feel like a crazy person but it is all for the safety of my little Squid.

7. Freaking people out is fun
I’m sorry but sometimes you just need some comic relief.  When I’m feeling a little crazy and people ask about Squid’s dairy allergy, I start naming off all the crazy random things I’ve found that contain dairy.  Toothpaste, chalk, balloons, deli meat, non-dairy creamer, tic-tacs, the list goes on and the look on their face is priceless.  Mama’s gotta laugh at life. 

8. Oh! I’m lactose intolerant too!
I know you’re trying to relate but no.  Just no. 

9. Ah, first time moms
When we go out to eat, I wipe down our entire table and all the chairs because Squid has a contact allergic to dairy.  I see the other people looking at my young family and probably thinking “look at that first time, overprotective mom, bet she wont do that with number 2, 3, etc.”  Actually, someone did say that to me once when they saw me pull his pacifier out of a ziplock bag.  You better believe if future children have food allergies, I’ll be protecting them too!  Doesn’t bother me one bit to keep him safe. 

10. I wouldn’t change a thing
We’re foodies so we thought Squid’s diagnosis of dairy allergy was the end of the world at first.  Then we realized it was just the end of the world as we knew it.  Once we learned how to sub, we realized that cutting out dairy opened up a whole new world of food!  Amazing food!  My baby is an appropriate weight, my husband lost 50 lbs and I’m wearing jeans I wore in high school (20 lbs less than my pre-pregnancy weight).  We feel healthier than we have in years and all by just cutting out dairy and not dining out.  The added fact that my child could die from a sip is extremely scary and I continually pray that he’ll grow out of it soon but I do not foresee us adding it back into our diet when he is able.

Avoiding Milk: PDF beginners guide

I have a friend that just discovered a dairy allergy in her son and another that is suspecting an intolerance in her newborn so I decided to put together a book of resources for beginners.

Avoiding Milk: A beginners guide

Emergency Care Plan

Avoiding your allergen

Chef Card

Food Allergy Field Guide

Additional Resources

www.foodallergies.org

www.kidswithfoodallergies.org

www.aafa.org

www.acaai.org

www.aaaai.org

When did you know?

I’m at that age where most of my friends are starting to think about having babies. Most are on their first, some are on their second, one is on her third, but they all have the same question. “When did you know Squid had food allergies?”

Looking back,  I feel like I should have known all along. He was never full,  always cranky, spit up hours after eating, and always had eczema on his face. The pediatrician diagnosed him with reflux at just a month old (symptoms started around 2 weeks old but the medication never really helped).  At 4 months, she advised us to start oatmeal to help with his symptoms. Looking back we see that he never truly had reflux, it was the dairy allergy all along.  One day I mixed the oatmeal with formula so I could save my frozen breast milk for bottles. He acted like it didn’t taste good and his face was red around his mouth. Later followed by an unpleasant diaper. When we brought it up at his next appointment,  the pediatrician suspected a milk sensitivity so we began avoiding dairy in his solid foods. I wish someone would have told me that I should be avoiding it as well while breastfeeding a suspected milk sensitive baby…live and learn.

At his 6 month appointment,  Squid only weighed 13 lbs. At a previous sick appointment at 5 months, he weighed 13 lbs 3 oz. My baby lost weight! What did I do wrong?  Nothing,  I did nothing wrong. We started supplementing Puramino formula every other feeding to help him gain his weight back. Within a couple of days my once crabby, vomiting, twiggy looking baby began to be the happiest baby I’d ever met after formula feedings but reverted back to his vomiting crab state after breastfeeding. Naturally,  I had had enough with the vomit so I decided to quit breastfeeding and stick with the formula. Squid gained 3 lbs that month!

A few months of expensive formula can really wear on your pocket book!  Since the pediatrician suspected just a sensitivity,  she thought he’d grow out of it quickly and advised us to try milk-based formula again at 8 months. I felt weird about it but I’m not a doctor so I followed the advice. Always trust your mom gut!  I was nervous so I prepared 1 oz of milk-based formula and diluted it in his usual 5oz of Puramino. I began feeding him and right away he didn’t seem right. We gave him benadryl as a precaution and it’s a good thing we did!

SIDE NOTE: if you suspect a food allergy, don’t try new foods outside of office hours!

It was a Friday evening and we were completely uneducated on dairy allergies. Until this night, I didn’t even know it was a thing. Dairy sensitivity, yes but an allergy? How can my baby possibly have a dairy allergy?  He took a nap on me after his bottle and benadryl so I could monitor him.  An hour later he woke up with hives starting around his mouth and on the back of his neck.  He played with his toys and crawled around as if nothing was bothering him. We called the pediatrician and a local urgent care clinic and waited impatiently to hear back from both. They finally called back with the same verdict. Emergency room.

He DID NOT have any issues with breathing, otherwise we would have taken him straight to the emergency room!

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When we arrived at the emergency room,  the benadryl had finally started doing its job and his rash was mostly gone. The doctor basically gave us a pat on the back, said “good job giving him benadryl” and sent us home.

There’s no mistaking a reaction after that night. He’s since been prescribed EpiPens and we have an emergency care plan to follow.

The egg allergy on the other hand, we didn’t discover until getting him allergy tested. I don’t really like eggs and after discovering his dairy allergy, we avoided the other top 8 allergens that we had not introduced yet.

Read more about food allergies at http://www.foodallergy.org