Food Allergy Awareness Week

My life has changed in this past week. I was holding on to making a post about it until I was certain.

My youngest has started sleeping through the night.

Now, for those of you who have been around a while, you will realize that my youngest is almost a year and a half old. So, yes, we have had a year and a half around here of horrible sleep. So, catching up this past week feels so so good.

Now before you “sleep experts” start telling me everything I did wrong, I want to say a little bit about sleeping and eating in my household.

I thought I had things down when I had my first born who slept through the night at about 4 months old. Then, I had my two boys. And, before you think I am just blaming it on their gender, know that I’m not. I’m blaming it on something else.

Food allergies.

This week is Food Allergy Awareness Week.

Why do we even need food allergy awareness? Well, for LOTS of reasons. But, one reason that I’m passionate about is that not all food allergies look the same. Typically when people think of food allergies, they think of the child that carries around the epipen and can go into anaphylactic shock if they ingest a peanut. Those types of allergies are terrible, scary, and life-threatening. My three beautiful nieces suffer from those types of allergies, and I know their mothers worry about them every. single. day. And, stories like this one where a 19 year old kid ate a cookie and died this year are enough to scare you out of your mind. You cannot take these types of allergies too seriously.

But, food allergies these days are so much more complex than that. And, to parents that have to endure them in the privacy of their own homes, and then be ridiculed in public by those that don’t understand, it can feel all too isolating. I know, because I’ve experienced it. Twice.

Kyle is now 4 1/2 and thriving. He has outgrown all of his allergies. My journey with him was not an easy one though. It meant lots of sleepless nights. Lots of tears. Lots of trying to educate doctors that didn’t understand. Lots of explaining. Lots of educating, well everyone….like the random person in the grocery store that you gave way too much information to because it just spilled out of you while you were looking for a dairy free probiotic. Because when you tell someone that your child is allergic to rice, they say it isn’t so. But, it was. I look back at that time in my life and part of me aches for the joy that I didn’t get to experience during the first year of his life. Instead, I spent time researching, food trialing, cleaning  up way more puke than I like to remember, getting on message boards to try to find anyone that would understand, seeing allergists, depriving him of foods he wanted, and working with occupational therapists because his aversion to solids had become so severe that he had to have therapy. Therapy just to eat a bite of food with a little bit of texture. It was exhausting. He was finally diagnosed with a rare condition called FPIES (food protein induced enterocolitis syndrome) and he also had MSPI (milk-soy protein intolerance). I was happy to have answers and validation finally after all my crazy defending myself to people around me who probably thought I was just plain nuts.

After Kyle, I wasn’t sure I could handle another child with food allergies. But, I made the choice to get pregnant again after Kyle’s issues were under control. And, along came my sweet baby boy Chandler. After just a couple of short weeks, the warning signs were all there again. He was miserable, and so was I. For 5 months we struggled through food elimination diets (me taking everything I could think of out of my diet because I so desperately wanted to breastfeed), blood in the stool, severe acid reflux, medications, and a puzzle that just didn’t want to get solved. I became depressed with the notion that I would have to give up breastfeeding because my food eliminations just weren’t working. At 5 months old, it is just not normal for your child to wake up screaming every hour and a half. My family was suffering. And, poor sweet Chandler was suffering. After many tears, and I mean MANY tears, I made the decision to give up breastfeeding. On a hypoallergenic formula, he started to make improvements. Yet, we found out that he actually has an IgE allergy (anaphylaxis type) to milk, and an intolerance (more of a gut issue) allergy to egg. It is complex. And, while I have no real “proof” like a test that proves that he has issues with egg, I know in MY gut that he does. We are still battling with that today. Yet, just recently he started drinking almond milk instead of the formula which was costing us $300/month. Hallelujah!

I sometimes laugh at his current diet though. As a food allergy mom, I can’t worry too much about whether or not he is eating fruit loops (one of his few snack foods that he can eat and that he likes) or whether or not he eats oatmeal for three meals a day. I do my best not to worry about the fact that sometimes a nutrigrain bar is his lunch because he gets tired of eating plain pasta every day at lunch time. We struggle everyday to get food into that little body, and I guess we are finally getting enough where he can sleep through the night without being fed. Yes, we were still feeding him in the middle of the night because he needed the calories, and it was a time when we could easily get them in him. I can’t stress over whether or not my child is eating “junk food” because I think to myself, “At least he is eating something.”

My boys’ issues are mild compared to so many mamas that I know who struggle every day to do the most common thing in the world. Feed their child. It is something that we all want to do. Feed our children. For some, it is easier than others. For some, every morsel of food has to be thought about, scrutinized, and tested. And, even then, results can happen that leave you back at square one.

I think doctors are sometimes just as puzzled as all of us frazzled moms. They can’t offer solid explanations as to why our children can’t tolerate one food, but can tolerate another. They leave a lot of the work up to us to figure it out. It’s exhausting, and it’s frustrating, and it’s lonely.

Whether you have a child with your typical food allergies like the top 8 allergens, or whether you have a child with more atypical allergies like mine, share your story this week. If you don’t have a child that suffers from food allergies, share mine. If you do, I know how hard it is. But, for everyone that doesn’t have to go through this, at least be aware. Be kind. Be considerate. And, trust that Mom that tells you that her child has food allergy issues, that she is doing everything she can to do the best thing for her child. Because, believe me, she couldn’t make it up if she tried. And, you definitely don’t want something like food allergies for your child. Not in a million years.