What is he allergic to?
All in all, my son has 8 food allergies and several more "non-introduction foods" (meaning our allergist has asked us to avoid them until he is a little older). So I begin with the ones that everyone understands:
He is IgE to Peanuts and Tree Nuts.
|Photo Credit: desegura89|
Easy enough. We all get that. IgE meaning anaphalxsis, so life is very, very bad if we have those. To be honest, the recent death of this sweet 13 year old girl in California has me more paranoid than ever, as even Epi-pens weren't able to stop her allergic reaction and save her life.
Then I try to explain his rare gastrointestinal food allergy (FPIES) in the next sentence:
He is FPIES to chicken, turkey, rice, bananas, and eggs.
This is the list that everyone stops and gasps at. I can always tell they are wondering if I'm some kind of crazy overprotective mom, or if I've imagined allergies that don't actually exist, or maybe he's not 'really' allergic, just sensitive. So I usually get the follow up question: What happens when he has them?
At this point in the conversation, I think of myself as an FPIES ambassador, spreading the word about a little known and frustrating allergy condition.
Well, two hours after he eats them, he begins to vomit. Profusely. Without stopping. For about an hour. Then he turns greyish blue, his blood pressure drops, and he loses consciousness. After the vomiting stops, he has diarrhea for several days. If this happens, we have been instructed to go to the ER for IV fluids immediately.
I say it like this to make people understand that it's not just a "tummy ache," these allergies are serious and FPIES reactions often require hospital admittance to recover and re-hydrate.
And then, if I remember, I mention his mild melon allergy, which so far has only resulted in hives where the juice touches his skin, and we think is oral allergy syndrome. So no watermelon, cantaloupe, or honeydew come into our house anymore, either. Luckily the other 'non-introduction foods' barely come up - fish and shellfish just aren't a common issue - especially since we already have to avoid foods like sushi due to the rice.
|Photo Credit: Tamaki|
I do a pretty fair job of sheltering Little Man from tempting foods that he is allergic to. I generally bake everything at home so that I can use my favorite Egg Replacer in baked treats. We've only been to one birthday party, partially because when he was younger he didn't understand what he could and could not have. For the party we did go to, I brought him his own homemade egg-free cookies so he wouldn't feel left out. I do feel bad for how limited this has left his twin sister, as she has no allergies, but we are a family and I'm not about to send one kid to a party and not the other.
At other gatherings, I watch him like a hawk and my husband and I spend most of the event stressed out by things that no one else would think about - peanut butter cups in a candy dish, any baked good (they almost always have eggs), chips that may have rice flour in them... We usually end up avoiding events where food will be served and I know that there will be a lot of food left everywhere by other kids (or adults). I used to love potlucks, now I avoid them as much as possible.
I also compulsively clean everywhere we go - snack left by a kid at the playground? I toss it. Food left on a table at a party? I throw it away. I'm sure I appear to be either very helpful or OCD, but of course I'm just worried that Little Man will pick today to 'try' something he can't have. I'm constantly playing a game of Risk, where the stakes are my son's life vs. some semblance of normalcy for our family.
We have some nice new neighbors, with a little boy, and the kids have played with him a few times. So I was honored when they dropped by and gave us a few Minion Cupcakes they had made (they looked a lot like these if you wanted to make some too). My kids were in the room when they arrived (or I would have hid them away from hungry eyes) and were delighted by them. As I said, I usually am able to shield my son from some of the foods he is missing. Not that day though. That day, a super kind gesture by a new neighbor/friend resulted in a very, very sad little boy. He began to cry and plead to have one. Soon I was crying too, because it's just so frustrating for me to deny him simple foods.
"Why can't I have one Mama?"
"I promise I won't make a mess"
And then sadly resigned to another food he can't eat after I gently explain about the eggs that are certainly in them and offer him some homemade ice cream from the freezer instead:
"I wish someday I could have cool cupcakes too."From his sister:
"But they are homemade Mama, I thought Caden could have things that were homemade?"You see, even when I think we've got the allergy thing down - always ask before you eat anything, don't eat anything that Mommy or Daddy haven't given the okay to, there are all of these pockets of confusion - homemade is okay? Only if Mommy makes it. Sunbutter and Jelly is okay, but peanut butter and jelly is deadly - and they look exactly the same and taste similar too.
Even the hope that we have that Little Man will grow out of his FPIES triggers has been somewhat dashed by the recent bloodwork showing that he may have developed IgE allergies to rice and egg - the two foods we had hoped to get back most of all because of their prevalence in many different processed foods.
I've never been one to shy away from an adventurous new food and I had hopes of raising adventurous eaters who would try all sorts of different foods before they even knew what being 'picky' was. Unfortunately, we cannot wish away the food allergy, no matter how hard we try. So we adjust, and the new normal becomes only eating cheese pizza or cheese quesadillas when we are out because they are usually 'safe.' Normal is declining many invitations to playdates and potlucks because hubby and I just don't want to take on the risk involved on any given day. Normal is calling every restaurant or food vendor prior to an event and grilling them on their ingredients so you can know, ahead of time, whether to pack a bag of safe foods for your kid. Normal is basing your preschool choice on the response to the question, "How do you handle allergies?" Normal is wondering whether it's hot enough out today that the Epi-pen might need it's own ice pack.
Normal is also a loving twin sister who knows all of her brother's allergies by heart and will tell anyone who tries to give him food that he can't have it. Normal is having both your Mom and twin sister check to make sure your Epi-pen is in the bag before you leave the house - every. single. time. Normal is not knowing that other people mostly buy their muffins, cupcakes, and cookies because your Mom always makes them from scratch. Normal is knowing that there are many, many caring people in the world who make huge efforts to accommodate your allergy kid, even though you insist that they don't have to, just because they want to make him feel 'normal' too. We are so blessed to have such caring friends and family who try their best to keep our Little Man safe. So at least we feel like we aren't alone... and that is a gift in itself.
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