Over the past 9 years, being an allergy mom, I’ve gotten a lot of different reactions from people.
“How do you do it? I could never do it!”
“You must be so overwhelmed and stressed out! What a pain!”
When I tell people my daughter has FPIES, they are usually shocked. Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature, blood pressure, and shock. It is rare and most hospitals don’t know much about it. 90% of kids grow out of it by age 3. But for my daughter, that was not the case. Instead of growing out of it, her symptoms got worse; she now has 10 food triggers. She has also developed CVS (Cyclic vomiting syndrome) and abdominal migraines. Both of which are common for children who have FPIES.
So, how do I do it? In truth, I don’t have much of a choice. When it comes to your child you can do anything, especially when you don’t have a choice. And for any of you reading who are allergy moms or in the process of finding out if you are, I’m telling you-you can do this too!
Our journey started at birth but our official diagnosis didn’t come for 7 months. I remember that day like it was just yesterday. We where leaving Children’s Hospital and as much as I was relieved I looked at my husband like, “Ohhhh shit no dairy, eggs or soy?! How the hell are we going to keep this child alive when she starts eating “human” food?”
I have asked myself many times, “how can food that so many of us take for granted hurt her?!” It puts a challenge in our everyday life and times has made my daughter feel abnormal. This is not a lifestyle or a trend and it makes me batshit crazy when people treat it that way. This isn’t part of some gluten-free fad. In first grade when her entire class made pizzas and she had to sit alone and make her own I would have done anything to take the “trend “ away. Many times when kids are eating cake and ice cream she has looked at me and said, “I just wish for one day I did not have allergies.”
Life with FPIES
There is never a break, a down moment. I can’t ever forget for a second that my daughter has FPIES. I go up and down every isle reading every single ingredient. One week there are no food triggers, the next week the same product now has it. I did every mommy and me and story time with my son. I made friends and he was able to socialize. It was different with my daughter because of her FPIES. I felt I had to constantly be that, “ helicopter”, mom and could never just sit and socialize or relax. Constantly living in fear that she’d grab something from another child or off the floor. I remember hurdling chairs to get to her at a party before grabbing something off the floor. I was scared that the world was going to hurt her, I was scared that no one could take care of her but me. Because of this, I isolated myself.
Sports or extra-curricular activities also came with many challenges. Explaining to every coach, teacher or whoever it may be, exactly what her diagnosis means, what foods she can have and what signs to watch for, is exhausting and overwhelming. Making sure there is always Benadryl, her inhaler and her Epi-pen in her bag, also exhausting and overwhelming. For the longest time, I never left her at a practice or anywhere for that matter. I envied the moms who would kiss their kids goodbye and come back when whatever activity it was, was over.
The best thing I have ever done was educate my daughter, our family, and others. We have an amazing team at Children’s Hospital Boston. They talk to me, but also always explain everything to her. Making sure she knows what she can and can not have. Anywhere she goes she carries a lunch box full of her food. She can rattle off her allergies faster than anyone else. She has never taken any food from anyone or tried something new without asking. I think because of the education she’s gotten about her allergies. And if something was to ever happen she knows how to use an Epi-pen and exactly what her action plan says.
As she’s getting older, she wants her independence. And she should have her independence. It’s not that I don’t trust her, but it’s terrifying to me. What I try to remember is that for her, something as simple as driving to soccer without me makes her feel independent, normal. And, what I remind myself is that I am confident that she knows how to take care of herself.
A lot of these experiences have become teaching moments, and as much as I wish she didn’t have FPIES, that I could take it all away, I’m thankful for the girl it’s shaping her to be. I will say to my daughter, “go ahead and have a ‘why me’ moment, but pick yourself back up and keep going.” She has handled this for the last 9 years with such grace and courage. And through it all, she’s taught me how to be fierce.
If there is any advice I can give a mom whose child is newly diagnosed it’s, do not isolate yourself. It’s lonely, you lose who you are, you lose friends. And really what you need the most are friends. Most importantly you need to take care of you so you can take care of your child.
It Gets Better
It gets better, I promise. You will find that coach that goes out of her way to make sure she is safe and helps her succeed. She will have friends that love to share what is in her lunch box and will go out of their way to make sure she is safe. You’ll find a village, who wants her to be included. And you’ll wish you could convey to those friends, what this means to you and your child.
I wish I could have sugar coated this all for you. But the truth is,m there are days that still really suck. I wish I didn’t feel so crazy. I wish I could tell you that she has never been made fun of for her allergies. What I can say, is that despite each year of my daughter’s life being a complete roller coaster, I am lucky. I am lucky enough to ride it with one of the strongest little girls I know; I always say she is little and fierce. Do I wish she didn’t have food allergies? Of course, I do. But I can tell you that this has made me stronger, it has helped me overcome fears and obstacles. And I hope one day she realizes it’s not what I did for her but, what we did together. My little and fierce girl.