Putting up that Epipen Apron post the other day reminded me that it might be past time for an update here about that sort of thing. I like to keep the Littles' Fan Club here posted on food allergy stuff for three reasons:
1)It helps me keep track of it all. Let's be honest, I have the memory of an aging ex-acid-junkie.
2)There is a shocking amount of outdated or plain wrong information out there about food allergies. This is my version of shouting from the rooftops, "A LITTLE ICE CREAM IS NOT BETTER THAN A LOT! A LITTLE DEATH IS THE SAME AS A LOT OF DEATH!"
3) Since so many of you three loyal readers spend time with the Littles in real life, I'd sure love you to know what's going on. So you're never tempted to, say, give Little One just a little ice cream.
Last year when we moved here we went to the new pediatric allergist, who is very good and very kind. He's a practical, evidence-based doctor, which I like. However, because of these beneficial traits, he did not quite believe my story.
I couldn't really blame him, so when he insisted on starting from scratch and doing all the tests and challenges on Little One to See For Himself, I sighed and went along with it. He started with bloodwork.
When the results came in, he talked about how these tests can sometimes be unreliable, and these probably were off a bit, making things look worse than they are. So, to really know what was going on, he would need to go with the most accurate, gold-standard method of testing for allergy- the food challenge.
Little One's food allergies are down to three:
1) Nuts (ALL nuts)
2) Dairy
3) Eggs
So we started with the one Her bloodwork shows She is least allergic to- eggs.
Allergist explained that most people with egg allergy can still tolerate egg that is baked- say in a cake or bread- because the high temperature of an oven changes the protein so that it isn't recognized by the body. So to start with a Sure Bet, we would do that first.
I baked a batch of 18 muffins. I used ONE egg in the recipe.
We started by giving her a crumb about the size of a lentil.
He gave me a wink and a nod and said he'd check back in 15 minutes.
After three, the nurse hauled him back.
Little One's face was covered in hives, which were rapidly spreading down Her torso and arms. Her eye was puffing up.
The Allergist just stood there dumbstruck for a moment. His jaw actually dropped.
And that was the end of that.
Later we came back to try milk. Because of the first experience, instead of starting with drinking even a drop of milk, they started with a scratch test. She was given a tiny needle prick to make an invisible disruption in the natural barrier of Her skin. Then they placed a drop of diluted milk protein- we are talking about only a few molecules of milk- on that spot. And waited.
Before a full minute had passed, the area around that spot was covered in hives so large they exceeded the chart used by the clinic to record them.
Not only that. At some point, She must have bent Her arm, and a little of the serum, placed on Her forearm, must have touched Her bicep. Because that part was also swollen with hives. No scratch needed!
Obviously, our "three-hour food challenge" was stopped after that one minute. She was given benadryl and steroids and made to sit there for an hour in case She stopped breathing. She didn't, but it sure made an impact on Allergist.
We didn't even try peanuts. As Allergist joked, we'd better not let Her so much as look at a peanut.
"I'll be honest with you ma'am", he said to me later, "I kind of wanted to be the knight in shining armor, riding up and giving you some of your life back. I know how hard it is to do what you are doing for your daughter. But it turns out all I can do is ask you to, for goodness sake, be even more careful than you already are. Your daughter's immune response is incredible. I called your other Allergist and boy did he remember you! She is the most highly allergic patient either of us have ever seen. Please. BE SO CAREFUL."
Living with Little One's food allergies is so much a part of what we do in this family, that by now it truly doesn't feel like a lot of work; it really isn't hard. It's as natural as breathing for us to scan picnic tables for food remnants before sitting, to cut Her apple on a separate board from the one we used to slice the cheese. It's such an automatic thing for me to keep one hawks eye on your yogurt-eating child, noting everything he touches, and one on Little One, making sure She has a wide berth, that I can do it without changing my expression or interrupting my conversation with you. When you leave my house, there isn't a surface those yogurt-eating hands have touched that I haven't scrubbed within minutes.
I don't do it while mentally cursing you and your evil, toxic snack. I do it while chatting with the Littles about how fun the playdate was. Because it isn't an imposition. It's just life. This is just the way we do things. It's so natural that occasionally it strikes me that our normal isn't everyone's, and I have to laugh. But all families are different. We all have our own normal.
I don't want people to avoid us, or to scare everyone by screaming at their child to Stay Away! You had eggs for breakfast! Truly, one of the very hardest things about this is that She is old enough to feel left out, old enough to be embarrassed by being made to sit alone at lunch or pointed out by well-meaning friends.
But I do want people to understand that it's real. That sharing "just a little" birthday cake with Her is not just going to break my anal-retentive rules, or give Her a little tummy ache. It could be the last thing She eats. Ever. That She isn't being rude when She won't shake your hand. She saw you eating goldfish crackers, and knows that your unwashed hand will hurt Her. That I'm not judging housekeeping when I point out a sticky spot on your couch to my child; I'm alerting Her to a potential danger.
We don't want to keep Her in a bubble; we have to raise Her to live, as She is, in the real world. For the most part, we keep our epipens handy and a sharp eye, and go about life like we always would have. But it helps to have friends and family who ask before offering Her food, or give us a heads-up when they know Junior spilled peanut butter on his shirt today, and a handshake would be better than a hug.
I don't need people to freak out over what She's doing and touching- that's my job. But it does help when they understand that we have to do some things differently, and don't mention it when we break out our own cupcake at a party, go over the restaurant booth with a wet wipe, or put a blanket down before She rides in a friend's car seat. We're not putting on a show. We're just doing our version of normal.
Next month we will go back to Allergist and see where She is. To be honest I don't have any expectations that there will be nights in shining armor arriving this year, either. But that's ok. For now we try to walk the balance between helping Her feel "normal" and teaching Her to Be SO Careful. And I try to teeter along the line between keeping Her safe and throttling the teacher that handed Her a bowl of ice cream. Ahem.
For all you who hang around us, thanks for accepting our version of normal, thanks for being mindful that food can be a danger for us. And for everyone else, there's probably an allergy kid in your life somewhere too. Maybe you can be their superhero. Maybe you could print the ingredients to the homemade treats you bring to class. Maybe you could make sure you put your peanut shells in the trash instead of scattering them on the ground at the park. Maybe when a parent says, "my kid can't have any" you could just say, "okay". And then, it will be.
1)It helps me keep track of it all. Let's be honest, I have the memory of an aging ex-acid-junkie.
2)There is a shocking amount of outdated or plain wrong information out there about food allergies. This is my version of shouting from the rooftops, "A LITTLE ICE CREAM IS NOT BETTER THAN A LOT! A LITTLE DEATH IS THE SAME AS A LOT OF DEATH!"
3) Since so many of you three loyal readers spend time with the Littles in real life, I'd sure love you to know what's going on. So you're never tempted to, say, give Little One just a little ice cream.
Last year when we moved here we went to the new pediatric allergist, who is very good and very kind. He's a practical, evidence-based doctor, which I like. However, because of these beneficial traits, he did not quite believe my story.
I couldn't really blame him, so when he insisted on starting from scratch and doing all the tests and challenges on Little One to See For Himself, I sighed and went along with it. He started with bloodwork.
When the results came in, he talked about how these tests can sometimes be unreliable, and these probably were off a bit, making things look worse than they are. So, to really know what was going on, he would need to go with the most accurate, gold-standard method of testing for allergy- the food challenge.
Little One's food allergies are down to three:
1) Nuts (ALL nuts)
2) Dairy
3) Eggs
So we started with the one Her bloodwork shows She is least allergic to- eggs.
Allergist explained that most people with egg allergy can still tolerate egg that is baked- say in a cake or bread- because the high temperature of an oven changes the protein so that it isn't recognized by the body. So to start with a Sure Bet, we would do that first.
I baked a batch of 18 muffins. I used ONE egg in the recipe.
We started by giving her a crumb about the size of a lentil.
He gave me a wink and a nod and said he'd check back in 15 minutes.
After three, the nurse hauled him back.
Little One's face was covered in hives, which were rapidly spreading down Her torso and arms. Her eye was puffing up.
The Allergist just stood there dumbstruck for a moment. His jaw actually dropped.
And that was the end of that.
Later we came back to try milk. Because of the first experience, instead of starting with drinking even a drop of milk, they started with a scratch test. She was given a tiny needle prick to make an invisible disruption in the natural barrier of Her skin. Then they placed a drop of diluted milk protein- we are talking about only a few molecules of milk- on that spot. And waited.
Before a full minute had passed, the area around that spot was covered in hives so large they exceeded the chart used by the clinic to record them.
Not only that. At some point, She must have bent Her arm, and a little of the serum, placed on Her forearm, must have touched Her bicep. Because that part was also swollen with hives. No scratch needed!
Obviously, our "three-hour food challenge" was stopped after that one minute. She was given benadryl and steroids and made to sit there for an hour in case She stopped breathing. She didn't, but it sure made an impact on Allergist.
We didn't even try peanuts. As Allergist joked, we'd better not let Her so much as look at a peanut.
"I'll be honest with you ma'am", he said to me later, "I kind of wanted to be the knight in shining armor, riding up and giving you some of your life back. I know how hard it is to do what you are doing for your daughter. But it turns out all I can do is ask you to, for goodness sake, be even more careful than you already are. Your daughter's immune response is incredible. I called your other Allergist and boy did he remember you! She is the most highly allergic patient either of us have ever seen. Please. BE SO CAREFUL."
Living with Little One's food allergies is so much a part of what we do in this family, that by now it truly doesn't feel like a lot of work; it really isn't hard. It's as natural as breathing for us to scan picnic tables for food remnants before sitting, to cut Her apple on a separate board from the one we used to slice the cheese. It's such an automatic thing for me to keep one hawks eye on your yogurt-eating child, noting everything he touches, and one on Little One, making sure She has a wide berth, that I can do it without changing my expression or interrupting my conversation with you. When you leave my house, there isn't a surface those yogurt-eating hands have touched that I haven't scrubbed within minutes.
I don't do it while mentally cursing you and your evil, toxic snack. I do it while chatting with the Littles about how fun the playdate was. Because it isn't an imposition. It's just life. This is just the way we do things. It's so natural that occasionally it strikes me that our normal isn't everyone's, and I have to laugh. But all families are different. We all have our own normal.
I don't want people to avoid us, or to scare everyone by screaming at their child to Stay Away! You had eggs for breakfast! Truly, one of the very hardest things about this is that She is old enough to feel left out, old enough to be embarrassed by being made to sit alone at lunch or pointed out by well-meaning friends.
But I do want people to understand that it's real. That sharing "just a little" birthday cake with Her is not just going to break my anal-retentive rules, or give Her a little tummy ache. It could be the last thing She eats. Ever. That She isn't being rude when She won't shake your hand. She saw you eating goldfish crackers, and knows that your unwashed hand will hurt Her. That I'm not judging housekeeping when I point out a sticky spot on your couch to my child; I'm alerting Her to a potential danger.
We don't want to keep Her in a bubble; we have to raise Her to live, as She is, in the real world. For the most part, we keep our epipens handy and a sharp eye, and go about life like we always would have. But it helps to have friends and family who ask before offering Her food, or give us a heads-up when they know Junior spilled peanut butter on his shirt today, and a handshake would be better than a hug.
I don't need people to freak out over what She's doing and touching- that's my job. But it does help when they understand that we have to do some things differently, and don't mention it when we break out our own cupcake at a party, go over the restaurant booth with a wet wipe, or put a blanket down before She rides in a friend's car seat. We're not putting on a show. We're just doing our version of normal.
Next month we will go back to Allergist and see where She is. To be honest I don't have any expectations that there will be nights in shining armor arriving this year, either. But that's ok. For now we try to walk the balance between helping Her feel "normal" and teaching Her to Be SO Careful. And I try to teeter along the line between keeping Her safe and throttling the teacher that handed Her a bowl of ice cream. Ahem.
For all you who hang around us, thanks for accepting our version of normal, thanks for being mindful that food can be a danger for us. And for everyone else, there's probably an allergy kid in your life somewhere too. Maybe you can be their superhero. Maybe you could print the ingredients to the homemade treats you bring to class. Maybe you could make sure you put your peanut shells in the trash instead of scattering them on the ground at the park. Maybe when a parent says, "my kid can't have any" you could just say, "okay". And then, it will be.
I can't believe poor Little One had to go through those tests again! It seems like torture (even though I understand the Allergist had the best of intentions). It is encouraging to hear that some of her past allergies have resolved though! You are an amazing mom and I so respect your perspective on life and parenthood - LO and Miss and this new little man are so blessed to have you!
ReplyDeleteI enjoy making my normal and your normal find a happy place together. Thanks for this update post!
ReplyDeleteI totally get how you scan everywhere you go for dangers, I do the same thing with sharp objects (or kids running with sharp objects.) For Magnus, keeping his one eye safe from harm is a part of life, a fact of life. It's amazing how our brave, spunky kids can be SO careful at the same time.
ReplyDelete