Welcome, Mamma Crew!
Today we’re going to be talking about one of my greatest challenges as a mom. And I think this would be a challenge regardless of how old I was when I became a mom. This is definitely a challenge for any parent who has a child with tree-nut allergies.
Our discovery came on a beautiful fall Saturday morning. We were all sitting at the dinner table and my husband was eating a piece of carrot cake. Now he and I love carrot cake and we had it in the house often. Emmy was about two or 3 years old at the time and she asked to taste it. I remember my husband looking at me and saying, “What do you think?”
We had followed pediatric recommendations — they never had an egg until they were of the recommended age — and we had just really been conscientious of the fact that they were premature, they had challenges, and we were going to listen to everything that our pediatrician recommended.
But by this time, it was completely acceptable for her to try new food. Now he put a little piece of carrot cake on his fork. I’m going to say this thing was about 1/8th — tiny, tiny, tiny little piece (if you look at your ruler, you look at 1/8th, that’s how big this sucker was!). And he put it in her mouth, and she pushed it out with her tongue. She didn’t eat it. Now I remember we laughed because this was not uncommon when they try new things, right? They don’t like the texture, they don’t like the taste (and carrot cake can have that spiciness to it). So we weren’t shocked when she pushed it out.
What we were shocked by was she instantly blew up in hives! Just instant! It started from her mouth. It spread down all the way to her chest and stomach! It was instantaneous! I don’t even remember why I had Benadryl in the house because I didn’t have allergies, my husband didn’t have any type of allergies (but I had it!) and I gave it to her immediately, we called the doctor, and of course, the doctor said, “Give her Benadryl.”
Now we were very, very lucky she did not consume the walnut. All she did was push it out with her little tongue. So here we were. We knew she had an allergy. We had seen the hives. We had seen the instant reaction. We had never, ever — ever! — heard about anaphylaxis. No one in our family had a food allergy and certainly, no one in our family had an anaphylaxis allergy to anything!
So we did what our pediatrician recommended, and we took Emmy (actually both girls, Emmy and Andy) to a pediatric allergist. Now, this was a complete torture! Just an absolute torture as a parent and I’m sure it wasn’t any fun for the girls either. Now, why do I call it torture? It’s because if you’ve ever been tested for allergy, you know about these — it’s these square things with rubber pricks that scratch your skin. Now in reliving the memory, I now recall, she was actually not yet two years old because she was tested again the following year after she turned two. So they had these panels and they do 32 tests. I don’t remember how many tests were for tree-nuts. I do remember both of the girls being miserable and the crying that just didn’t stop! And of course, your heart is going out to them.
As if that wasn’t bad enough, if you have ana allergic reaction, it can be rather uncomfortable. I’m going to say painful. Especially if you have a strong reaction. Now Andy, my twin daughter, did not have a strong reaction. She had a minimal reaction. And of course, we were advised to stay away from tree-nuts and we were told that she might outgrow her tree-nut allergy by the time that she was two. Emmy, on the other hand, the walnut test exploded. Just absolutely exploded! The doctor said he had never seen a test come back so bad! And she was miserable and crying and scratching (and of course, you’re not supposed to let them scratch and you’re trying to keep your baby from scratching but she’s miserable and she’s in pain and she wants to do it and… I mean it was just torture for them and it’s torture for us to watch them go through this!). But of course, it was necessary. We needed to know what challenges we were facing as a family.
Immediately, after the doctor saw the test for her back (the reaction she had had, of course), we gave her Benadryl and I lathered her back with Benadryl cream. And It didn’t take long for her to feel better. So the doctor said tree-nuts were a serious problem. Let me rephrase that — walnut would be fatal; tree-nuts were going to be a problem. And she was probably going to develop the same severity that she had to walnut, to other tree-nuts. Of course, if she was going to outgrow it, he said, she was going to outgrow it by the time that she turned two. At the same time, he gave us some hope. He said, “You know, they are developing allergy shots and allergy therapies for tree-nuts. Within a few years, there should be something available on the market.” Of course, Emmy is 13 years old and there’s still nothing available on the market for tree-nut allergies.
So at the same time that he said this to us, he told us she wasn’t just allergic. She had an anaphylactic allergy to tree-nuts. We looked at each other and of course, whiplashed back to his face and asked, “What does that mean?” Of course, the answer was not one any parent wants to hear: it’s basically a severe, potentially life-threatening allergic reaction. And this reaction is fast. It can occur within seconds or minutes that your child is exposed to the specific allergen.
So what does that really mean? Well, in your typical allergy, you’re going to get hives. And that’s typically the worst of it. When your child has an anaphylactic reaction to an allergen, they’re going to have hives — painful, rapid, hives. I’ve seen Emmy’s hives turn into blisters in a matter of seconds. Not to mention the fact that she’s going to have chest tightness, discomfort, and, depending on whether she’s been in contact with it or she’s consumed it, she could develop difficulty breathing, nausea, vomiting, diarrhea, abdominal cramping. Her throat is going to close so she’s gonna have difficulty swallowing. And in severe reactions (because
difficulty breathing is not severe, I suppose!), there’s low blood pressure, unconsciousness, abnormal heart rhythm, rapid pulse, loss of oxygen, wheezing, severe swelling of the face, eyes and the affected body parts, airway blockage, shock, cardiac arrest. And these can all happen within minutes. Minutes! It is quick, it is fast.
And as if that wasn’t bad enough, the doctor is admonishing us to take things seriously by telling us some horrific, horrific stories of children who have died within five minutes of going into anaphylactic shock. My husband and I were completely out of our minds! Out of our minds! With worry. With concern and trying to understand how we were going to manage this new existence.
I don’t know if you’ve ever looked at the back of a package but everything seems to be processed in a facility with tree-nuts! And almost everything in a bakery says it may contain tree-nuts! So what are you supposed to do? How is your child supposed to live a semblance — a modicum — of a normal life?
We went home and we went through every single piece of food that we had in the house. And we must have thrown away half of our foodstuff because it was either processed in a facility with tree-nuts, might contain tree-nuts — we were not going to take a risk! Absolutely not! And of course, we immediately ran out, stocked up on Benadryl, and got our first set of epi-pens.
Life had irrevocably changed. Shopping was a completely different experience. We read absolutely every single label before we put it in the cart. And you’re not just reading the labels of food that has been processed. You also have to be careful that if you purchased food, it’s not next to nuts so that there was no accidental contact. You don’t just look at food — you look at lotions (my goodness! So
many lotions have almond extract in them!). She also developed an allergy to coconut! So coconut was also a problem. And there’s a lot of products — shampoos, lotions — that contain coconut oil.
The way we travel was also different. We knew our safe places. Now you can criticize McDonald’s for many things — how much fat there is in their food, how much sugar there is in their food — but McDonald’s is a blessing to a parent with tree-nut allergies. Because at least back then (I don’t know now), it was a safe place. There was nothing there that had any tree-nuts. And when we travel, that was the only restaurant where we would eat. It helped that the kids wouldn’t eat anything but chicken nuggets. Of course, I had to peel the crust (and most of the time, burn my fingers! But that’s another story! The Story of the Picky Eaters and Acid Reflux!).
But in this case, we really, really had to watch what we were doing. I’ve had all of my kids’ snacks. Wherever we went, I had to make sure that I had what it was that they were going to eat and that it was going to be safe. And of course, if we were traveling from point A to point B, we never tried anything new unless we were in an area where there were medical services.
And of course, at this time, we were living in Michigan, far away from any major hospitals. So when we went from point A to point B, I had to pack everything they were going to eat, or I had to know that there was a McDonald’s nearby where the kids could have their favorite meal — Chicken McNuggets.
And this added a level of unexpected stress as parents because we were always incredibly conscious that if we made a mistake, we could be risking our child’s life. The paranoia that comes with it is unbelievable! It is a healthy form of paranoia because this is an
incredibly serious problem. The challenge here is, not only does it radically change your life but it also radically changes your relationships with people.
Most people do not understand that an anaphylactic allergy is not the same thing as a regular allergy. And no matter how many times you explain this, the problems that arise are just absolutely incredible. And I will be talking about that in next week’s episode. But the reason I bring it up now is because even visiting somebody became a challenge.
Now it got to the point where my husband and I literally carried insulated backpacks wit the kids’ food. That way, we always knew, we could always rest assured that whatever it was they were eating was safe. And our kids grew to rely on that. They knew they were taken care of. They knew things were safe when they came from Mom and Dad.
And eventually, they understood what it meant to have such a serious allergy. But when they were young, all of the onus was on us. On us to make sure that they were in a safe environment. On us to keep them safe and the anxiety and paranoia were palpable. Just absolutely palpable. My sympathy goes out to any parent that has a child with a life-threatening allergy because it does change life radically for all of us.
And the thing about it is that while the anxiety diminishes as they grow older, as the children grow older, and they can be more conscious of the threat and more conscious of what it means to remain safe, your anxiety as a parent does not diminish. It just doesn’t. These are your babies. And you want them to be safe, and to lead happy, normal lives.