Darcel White is blogger, autism and dyslexia advocate, and single mother to three children with food allergies, seasonal allergies, and asthma. She shared with us how she found out about her children’s condition and the actions she takes every day to make sure they can live normal lives.
What are you most passionate about?
“One of the things I like to do is to make sure that people are well educated and more aware of food allergies versus food intolerance because there’s still a lot of misinformation out there and most of the time when I tell people that my son has food allergies I’m often met with, ‘Oh but we’re gluten free’ and that’s not what I mean. Gluten is actually one of the only foods he’s not allergic to, and so I really try to make sure that people understand the difference between a food allergy and an intolerance and what a true food allergy is and the reaction that it can cause.”
When did you decide to seek medical help for your children?
“As I said before all three of my children have food allergies and asthma. My son is way more severe than his sisters are. So, the first time I realized we had a problem he was two years old, and he asked for a bite of my scrambled eggs. I gave it to him and within a few minutes he had fallen asleep. Then I started noticing these bumps all over him, and I thought a mosquito had gotten into the a house because it was summer. Then he started scratching and he wakes up, and he is coughing and he’s turning red and he’s wheezing. I did not know at the time that he was going into anaphylactic shock. So, I rushed into the ER around the corner and the doctor asked me what happened, checks him out, and she comes back in and hands me an EpiPen. She says, ‘You need to get your son tested for food allergies because egg is not the only one, and this will happen again. It’s not a matter of if, it’s a matter of when, and you need to be prepared for the next time it happens.’
We discovered he’s allergic to peanuts, tree nuts, shellfish, fish, dairy, and egg. But, on the last couple of years we have been able to do food challenges for the baked egg and fish which he passed both and so we’ve added those foods back into his diet and have a very happy little boy. It is really nice to be able to make muffins and cupcakes and brownies and chocolate chip cookies for him. We have found a plant-based milk that he enjoys from Bolthouse farms because dairy is probably going to be with him for a while. Every time we do testing that one still comes up as being one of the biggest.
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Who is your greatest source of support?
“My friends and family have been super supportive. My son knows his food allergies. He knows to ask before he eats something. I have had friends cook for us and they check food labels like I do, they take pictures, they send them to me, and ask ‘Is this okay for them to have?’
It’s just been really great having my friends and family be so aware and willing to be educated on the topic. They also know how to use the EpiPen in case he ever needs it, and I stress to them that it’s not a matter of if it is a matter of when just like the doctor told me.
Since he was two (he’s almost eight) I’ve have had to administer the EpiPen three or four times. We almost lost him once. He had to have a second dose of epinephrine and Benadryl, and oxygen and a breathing treatment, and that ambulance did not move until he was stabilized. It was terrifying sitting there wondering, praying, hoping that my child didn’t die.
It’s crazy but I’m thankful that every time he’s had a reaction it’s been with me because I don’t really have to stop and think about what to do, I’ve been through it before so I just know I to stay calm when I have to call 911 and he knows that the EpiPen is coming. He sits there and takes it because he knows it’s going to help him, it will make him feel better, and then we’ll wait for the ambulance to arrive. So, having good friends and family who are always in a corner supporting us has been great.”
What is your advice for others?
“The best advice that I can give to someone who has been newly diagnosed with food allergies, or maybe your child has been diagnosed with food allergies, is to take it one day at a time because it’s a lot to process. Get online and find a support network or local friends. The internet is a great source of information. I’ve signed up for [many] newsletters I believe one is Kids with Food Allergies and they do a food allergies and asthma newsletter which I know I said my children have asthma too.
One of the biggest things I would say is checking your food labels. That is something you have to be vigilant about, and finding places to eat out that are safe. There is an allergy app I believe it is called Allergy Eats. When we go out to eat I ask to speak to the kitchen manager and I explain to them that my son has severe food allergies. I tell them he has an EpiPen [for] his food allergies, and I’ve even requested that the kitchen manager be the one who bring the food out so I know that it’s safe. I always thank the staff too because I know it can be a lot of work for them too.
Dairy is one that has many different names and if you don’t know what look for it’s easy to miss, so stay on those food labels even if you’re going to the same store three or four times. Always check the food labels, brands change ingredients, there can be cross-contamination, and also your child allergist can be a great source of information.”
Why do you want to share your story?
“I hope that me sharing my story has helped someone feel less alone. I know it can be very overwhelming and your child can feel like they’re always being left out because maybe you couldn’t find a substitute food or you just were tired and didn’t feel like making it. [It’s] okay. There have been plenty of times my son has just had to eat the food that we have and I know it’s safe. It’s different from what everybody else is eating, but he’s safe and that’s what matters. So, I just want others to know that this will become your new normal. It’s a lifestyle that you will get used to. You won’t even have to think twice about it after a while. Before long you will be sharing your story and helping someone else.”