Parentwin had a contributor post today that smacked me right in the head. It’s about food allergies, and what it means to be the parent of a child with food allergies.
See, my lovely and bright 4, nearly 5 year old daughter Pie has a food allergy. She’s allergic to cashews, pistachios, and to a lesser extent, English walnuts. The allergies combined mean that all tree nuts are dangerous for her, as they are not in the same family. I’m going to tell you about the day I found that out. I wrote this originally for my own private journalling the day after the event happened, and it’s a bit emotional. I warn you about that, because it has upset people to read it more than once in the past.
June 29th, 2011
I’m going to try to write this out to let go of it. This is what it is to find out your child has a serious food allergy.
Around 4 yesterday the kids starting asking for a snack. This is fairly reasonable, so I starting making a simple sandwich for them to cut in half and share. While I was getting ready to make it, they danced around my feet like eager puppies and investigated the different food bits on the counter.
One of the food bits was a bag of cashews. I hadn’t yet fed the kids any nuts because up until now their chewing skills were not that remarkable. They were far more apt to just try to swallow it whole.
So, I gave them each a cashew while I was making their sandwich and told them to chew it up really well before swallowing. They both eagerly put their cashews in their mouth and started chewing like crazy.
I went back to making the sandwich, and looked down a few times to make sure they were swallowing okay. P chewed his up, and then promptly spit it out. Not that unusual a response for a 2 year old, especially him. Pie seemed excited by hers, so I gave her two more and told her that I was making a sandwich and she could eat those while she waited. She said okay, and then stood there watching me for a minute. Instead of eating the two more in her hand, she put them on the counter, said “no thanks,” and tried to spit out the one she had already swallowed.
“Oh, you didn’t like it? Okay. Here’s your milk. Just wash the taste out of your mouth and I’ll give you your sandwich in a second.”
She tried to drink some milk and stood in the gate to the kitchen. P decided he had some very important business in the living room and pushed through her to get there. “No! No pushing, P. I’m sorry, Pie, are you okay?”
She looked up at me from the ground where she was crying. “P pushed me!” “I know, baby, I’m sorry. No pushing! Ow! Pushing hurts!” I picked her up and put her on the couch so I could get the sandwich to them. When their blood sugar gets too low, like a lot of other 2 year olds, they are much more likely to cry, much more likely to push, and just generally aren’t happy.
I was hurrying trying to make the sandwich, while Pie was on the couch crying a little. It wasn’t a big cry, just a kind of complaint cry. The kind I usually try to hug her through. I finish making the sandwich, cut it into fourths, get out their little plates and put half on each plate. Then I bring it out to them and give a plate to each and go back to the kitchen to clean up the sandwich mess.
In the meantime, Pie has gone from complaint crying to just crying. This isn’t great. I go and check on her. She’s laying on the couch. “I got your sandwich, baby, you hungry?” “Noooo!” she says and itches at chest. “You okay?” “Nooooo!” with more itching.
Crap. Crappity crap. I pull up her dress and look at her stomach and chest where she’s itching. Raised swatches of white welts. Her skin is angry and red. Oh. Oh no. The cashew. Oh. OH FUCK. I pull her dress off and look at her whole body. All of her trunk is covered in the welts. I look at her eyes and lips. No swelling. Her eyes look a little puffy, but I think it’s the crying.
I run to the kitchen and pull out the liquid children’s benadryl, and make a dose for her with an oral syringe. “Hold on, baby! Mommy is making some medicine for you.” She’s just whimpering and scratching horribly. I grab the oral syringe and my hand hits the calamine lotion, so I grab that, too, and some cotton.
“Okay baby, take this medicine.” “nooooo!” “Come on, you need to take this medicine.” I put it in her mouth and she manages to take the whole dose. I fumble with my phone and call our pediatrician’s office emergency line.
“Is she coughing or are her lips swelling?”
“No.”
“Drive her to urgent care. Now. If she starts coughing or facial swelling, call an ambulance.”
“Okay.” I am dabbing the calamine lotion on her while talking. Just keeping my hands busy. I hang up. “Okay guys, we’re going to go see the doctor. Mommy is going to get some extra clothes quickly for Pie.”
I run through the house now. I grabbed the first shirt and pants I can find. Grab the second. Pie often throws up in the car, and I want to make sure she has a change of clothes. I shove everything in the backpack and get Pie quickly dressed in a shirt and pants. The dress I took off of her was hard to pull over her head and I don’t want to pull it back on her again. I throw on the kids’ shoes.
“We go in car? I need my purple glasses,” Pie tells me through wisps of hair and a tear stained face. I grab her sunglasses, throw the iTouches in my purse, backpack on my back, and grab P’s hand. Throw Pie on my hip and rush out the door.
P promptly walks over to his side and waits there patiently while I buckle Pie in. This is pretty much against general protocol, but he’s being fairly cooperative. I buckle him in, “thank you for being so awesome, baby,” and give him a kiss on his nose. “You’re being very helpful.”
I jump in the car, and dial my husband on speed dial and put it on speaker phone. It takes all of one ring to get through to him. “Hey, I’m on my way to urgent care. Pie ate a cashew, and it looks like she’s allergic.”
“Uh. Where’s urgent care?”
“Remember where we took the kids last time? Over by the Burlington?”
“Oh, yeah. I think so. I’ll meet you there.”
“K. I love you.”
“Love you, too.”
I hang up and try desperately not to speed. Every half a minute or less I look in the rearview mirror and see her head nodding downwards. She’s not crying anymore. She’s just laying there in her seat with her hair covering her face and her body limp. At every red light I put a hand back and shake her a little. “Talk to mommy, baby. You okay?”
Her voice is tiny. Tinier than I’ve ever heard it be. So tiny and so tired. “Ya. I’m fine.” Sometimes she says, “I don’t feel well.” So tiny. So tired.
Halfway there and she stops responding. I hear her retching in her seat, and see it happening in the rearview. “Oh no! I sick,” she says and drops her head again.
“I’ll clean you up soon baby. We just gotta keep driving this time. Okay? You hear me?”
She says nothing. Her hair is over her face. She’s covered in vomit. I have a hand on her foot and pull on it a bit every now and then. She stretches her leg back sometimes, and that keeps me going.
Sometimes she doesn’t, though. I think about her eyes being a little bit swollen from crying. Maybe it wasn’t crying. Maybe it was the allergy, and I should have called an ambulance. I keep squeezing her foot and pulling a little. P reaches over and pulls on her a bit. We’re very close. I can’t quite remember where it is, but I have a good general idea, and expect that I’ll recognize it when I see it.
I keep looking while I’m driving and squeezing her foot. I’m scared that she might have thrown up the benedryl. I keep driving, though.
There it is! I was as close as I thought. Oh thank you.
I park and jump out with the backpack already on my back somehow. I get P out of the car, and run around to her side. I wrap her up in a towel and carry her in. “I sick. You gotta clean me up. Oh no.” Her voice sounds less tiny and tired. I kiss her cheek.
“We’ll get you cleaned up soon, we got to see the doctor first, though, baby.”
I run in carrying her wrapped in a towel and with P holding my hand. “You carry me? P hold your hand cross street.”
“That’s right baby. You have to hold hands to cross the street.”
I run up to the the nurse and she says to sign in. “I can’t write right now, I’ll give you the information, just ask me the bits.”
So, she does this, quickly. As soon as she gets to “reason for visit” she puts the pen down and she says to follow her. I put Pie down on the table and pull off her vomit covered shirt. The nurse puts a child’s dressing gown on her. It is purple with koala bears riding rockets on it. Then she puts a meter on Pie’s finger.
“Her oxygen saturation is 100%”
“Oh thank god.”
She looks at her face. She is white and bruised looking. Red and purple splotches cover her. Her eyelids and the creases under her eyes look like dark purple holes. Bruised. Her body is still limp, but she’s sitting okay. The nurse raises her gown and looks at her body. It is also white as can be and bruised looking. Red splotches. The welts are gone. “How long ago did you give her the benedryl?”
“I dunno, 20 minutes ago? 30 minutes ago? She threw up in the car, so I was scared she threw it up.”
“No. If she held it down for 10 to 15 minutes, it’s in her.”
“Okay.” P is running in and out of this little corridor between the waiting room and the offices. I let him run.
“Okay, the doctor will see you soon. You can wait out here.”
I take the kids to the waiting room and pull the iTouches out and set them up with games to play. I convince Pie to let me change her vomit covered pants. She’s mad, though, because her pants are purple and the pants I want to change them to are red. The dressing gown is purple, and she wants them to match. I show her the red rockets on the gown, and she agrees to the pants. I smile at this simple Pie-ism. It is so her.
P insists on sitting next to Pie, and pulls her blanket out of the open backpack at our feet and gives it to her. “You’re so sweet, P. Thank you for being so nice,” and I give him a kiss and hug. He smiles and then starts concentrating on his game. Pie isn’t really concentrating much and it’s constantly switching off and she’s asking me to fix it.
The nurses call us over to get insurance info and such. The kids share a chair and play with their games while I do it. Again, I don’t seem to have it in me to write, so I give information and try to hold it together. I am scared that if I hold a pen it will just shake jitteringly all over the paper. My mind keeps thinking of her not responding in the car. Of the nurse saying that her oxygen is 100%. These two bits flashing back and forth between each other over and over in my head. I think I look calm, but I am not.
We finish and then we wait a tiny bit more. Then we go back to an exam room and wait there. P cries briefly when we go in the room but I tell him that we are there for Pie, and no one is going to mess with him. That seems to calm him down.
“The doctor is going to come in a minute and look at you, Pie. She’ll ask you some questions, and listen to your heart and lungs, and look in your ears and mouth.”
“She’ll use a stethoscope?”
“Yup. She’ll use the otoscope to look in your ears and mouth.”
“Oh. She’ll look in my ears and look in my mouth?”
“Probably, babe. It’s what doctors do. She might give you a shot, too.”
“A shot to make me better?”
“Yup.”
The doctor came in fairly quickly and asked us about what happened. She said that we’d give a shot, except she didn’t say shot out loud. I told Pie that we’d have to give her a shot, and it would hurt, but then she would start to feel better. She told me she’d give me some medicine to give her for the next three days, and to repeat the benedryl in 4-6 hours because tree nut allergies are notorious for reactivating (the reaction going away and then coming back).
My husband called right then and I told him what exam room we were in. He came back right before the doctor left. Everyone was happy to see daddy. Me, especially, I think.
The doctor left. My husband looked at me. “So, a cashew, huh?”
“Yeah. The worst I was afraid of was them not chewing it enough and choking on it. It never occurred to me to worry they might be allergic.”
“He ate one, too?” he said, indicating P.
“Yeah, it looks like he’s not allergic.”
“So, epi-pens for both of them, huh?” Yeah. At least with him, we can generally be able to keep him away from dogs. It’s not an allergy like nuts.
“Yup.”
The nurse came in then. She had some prednisolone for Pie to take by mouth, and then a shot of epinephrine. The nurse tried to tell Pie that the shot wouldn’t really hurt much.
“This’ll hurt some, Pie. It’s probably going to hurt a lot. But it’ll be over really quick, and I’ll hold you the whole time.” She just looked up at me, bravely. I held her and she giggled nervously when the shot went in, but she didn’t move, and she didn’t cry. It was over very quick.
And that was that. We’re supposed to keep up on the prednisone liquid for three days, and keep an epi-pen with her. No tree nuts at all until we get a testing done. I’ve talked to her doctor today and we’re on the quick road to getting that done.
So, if you want to know what it’s like to find out that your kid is allergic to cashews, well, this is it. There were many outcomes that could have been so much worse. I feared all of them while I drove.
Today she’s running around and talking about how she was sick and went to the doctor and the doctor gave her a shot that made her better. Her face looks pink. Her eyes bright and dancing. There are still shadows under her eyes, but they are light. The shadows in my head are harder to banish.
——-
This happened on June 28th, 2011, and I sat down to exorcise the demons of it on June 29th. Since then we had Pie tested and found her allergies confirmed. We carry epi-pens with us, always. Right now I feel in a bit of a free-fall about her allergies, specifically.
See, my kids started pre-k on Monday, and for her to have access to her epi-pens she has to have a current medical note and an unopened box with two epi-pens. These pens cost near a hundred dollars even with our medical insurance, and have to remain at the school. Which means we need another set for her personal carry around set. Which means another hundred dollars. I might fight that one, one day. The safest place for her to have her epi-pens is directly on her, not in a cabinet in a school nurse’s office. Her allergy appointment this year to get that note and the new pens is 8 days away. It’s a gap in coverage while she’s at school.
A gap wherein any schoolmate could offer her a snack that she should not eat. She’s pretty good about such things, and asks regularly if something is safe for her to eat, but that doesn’t actually keep her safe. Heck, the epinephrine pens don’t actually keep her safe. They merely provide a 10-15 minute window (first application) and then about a 5-8 minute window (second consecutive application) wherein she has a chance for emergency personnel to save her.
There’s even a chance that she’ll outgrow the allergy. Around 10% or so of children with the allergy do. That’s not a large chance, but if your chances were that good to win the lottery, why you’d play every day, wouldn’t you?
We’ve learned a lot in that time. Learned about how very many foods are made with tree nuts, or made in places where things are made with tree nuts. Pie talks about the day sometimes, too. It’s a part of her personal mythology. She tells of “the day I ate the tree nut” and about getting sick in front of the fridge. She’s mixed it up with a different period of sick wherein she threw up on the kitchen floor, but that’s okay. Personal memory and mythology are a private and individual thing, and attempting to alter someone else’s are usually futile. She does remember the doctor giving her a shot, and the scary car ride (a ride that should have never happened- always call an ambulance, always).
The most surprising thing to me, consistently, has been the almost personal outrage of others about people with food allergies. The insistence that it’s an inconvenience to not be able to eat the peanut butter sandwich at school, for instance. That if a child’s life was in such danger, why that child should simply not go to school so the hundreds of other children shouldn’t have to suffer the fate of a lunch without peanut butter (I mention peanut butter, even though Pie is not allergic to peanuts at all, because it is the most usual and often most sensitive and dangerous allergen – one where sometimes even a grain of the allergen protein can provoke anaphylaxis and therefore cause death – and yet it is often at the center of the self indulgent anger of the non-allergic).
There’s also a lot of debate about antihistamine use for anaphylaxis, just to be clear. Our allergist wants us to keep it on hand (and to keep the liquid kind specifically as chewing and swallowing may not be possible in the case of anaphylaxis) and apply it in emergency. Some say that it does not slow down anaphylactic shock, and that it wastes precious seconds when trying to save a life.
In that time we’ve also finally identified what Pie’s “first exposure” was. See, the first time someone is exposed to something they will be allergic to, they will not have an allergic reaction. As a matter of fact, allergies can simply develop from things that you’ve had plenty of. With Pie it was her second exposure to tree nuts that got her sick. Her first exposure to it was a happy time, and so blase that we had totally forgotten it happened at all. When she was around 11-16 months old or so, my husband and I were grocery shopping with her and the store we were in were giving out samples of pesto. Pesto has nuts in it, you see. Often pine nuts, but sometimes walnuts. She loved the pesto, and we were so pleased with her burgeoning palette that we just filed that memory away in things that had happened.
Is there anything you should be aware of when it comes to food allergies and children? Lots.
Oh, and also? She wears a medic-alert bracelet that identifies her allergy, and gives emergency info on what to do along with contact info for myself and her doctor. More than once I’ve seen an eagle-eyed person spy her bracelet and ask her about it. It’s probably the one thing a person can do that makes me breathe a little easier. First, they realized what the bracelet was, second, they knew enough to ask her about it, and finally, they are aware of a very serious but not obvious danger.
I know this entry is sort of all over the place, but that’s part of how I feel about Pie’s allergy: all over the place. It is an invasive species that has planted itself in the garden of my family, and we deal with it’s shoots and tendrils in lots of places, and in lots of ways. It doesn’t diminish the love, joy, or fun we have, but it is a scary fact that we live with, and Debby’s guest post at Parentwin smacked me right upside the head with a lot of those feelings.
pollychromatic 