"The most wasted of all days is one without laughter." ~e e cummings

Sunday, May 9, 2010

journey to the unknown

In honor of Food Allergy Awareness Week (didn't know there was one, didya?), I thought I'd share our experience learning of Evan's multiple and severe food allergies. And what better place to start, than at the very beginning............

The first two weeks of Evan's life were perfect. Blurry, brand-new, full of unknowns, and mostly sleepless, but perfect. By the end of the second week, however, my quiet, peaceful baby had changed. Beginning at 7pm every night, we quickly ate dinner, got ready for bed, and got things ready for the next day as quickly as possible because, at any time, the Screaming would start. It started every night by 8 and lasted until midnight or later (sometimes much, Much Later), at which time all three of us would have finally passed out, two of us having cried ourselves to sleep. The days were better, but still difficult. And by the end of the week, I was That New Mom: rocking the inconsolable, screaming infant, sobbing on the phone to her husband to Come Home Now. He did, and we brought our baby to the doctor where he was diagnosed with the malady that no new mom wants to hear: Colic.

So we were facing six months of this screaming. This helplessness. This SOMETHING IS WRONG WITH MY BABY. The doctors gave us some tips to try (we were already trying them all...we had, of course, already googled "colic remedies") but basically just told us to hang in there. But by some weird coincidence, before the crying started, I had read an article in one of my parenting magazines that reported that probiotics had been shown to be beneficial in treating colic. At the time, I remember thinking, "Man. Glad my kid doesn't have that." I mentioned the research to Evan's pediatrician, who supported the treatment plan 100%, and we started Evan on probiotics the very next day. This saved our lives. Well, our sanity, anyway. The probiotics soothed Evan's troubled little tummy and he was so much happier. My baby was back.

We kept Evan on the probiotics for three months, at which point we sloooooowly weaned him off. To our complete surprise and joy, the crying never returned. He was healed.

Or so we thought.

Within a few days or weeks (I wasn't really paying attention, not knowing that I'd be later trying to connect the dots....), we noticed eczema in his elbow and knee creases, and under his chin. He was a little baby who drooled a lot, though, and it was during the hottest part of the summer, so we wrote it off. We treated it and kept him comfortable, but didn't give it much deeper thought. Over the next few months, he broke out in several random rashes, continued to be a scruncher (he was never a Lay All Out kind of baby, always had his knees scrunched up to his belly), and didn't sleep (but that was nothing new), but again.......he was generally a happy baby.

When he was about 9 months old, we gave him his first taste of Baby Yogurt. After a few bites he had a slight rash around his mouth. I called my mom (mother of eight, former pediatric nurse) who said, "Hmmmmm....could be nothing, but you might want to stop feeding him the yogurt and run it by the pediatrician." Uh Oh. My mom never tells me to call the pediatrician. I must have called her a billion times since his birth ("Is he eating enough?" "Is he eating too much?" "He's got a cough/runny nose." "Is this poop normal?" etc.) and she NEVER told me to call the pediatrician. The times that warranted a doc call, I already had. So....I called. The pediatrician who I spoke to said it could be "something" or it could be nothing, and to try the yogurt again tomorrow. After a single taste the next day, the lower half of Evan's face turned fire engine red, and I called the doctor. I was shocked, SHOCKED when she told me that it sounded like Food Allergies.

We have no family history of allergies. I did everything "right" to lower Evan's chances for developing allergies: I breastfed, I delayed introduction of solids until after he turned six months old, and when we did, we introduced only one new food every four days. He hadn't tasted any of the Top 8 allergens (milk, egg, wheat, soy, fish, shellfish, peanuts, and tree nuts) until the milk-based yogurt. Little did I know that none of these things matter. Food Allergies can "happen" to anyone, at any time.

I was told to avoid the Top 8 until he turned a year old. No problem....the only one of the Top 8 he had had was the yogurt. I started paying attention to food labels a little bit (most of the Stage 3 baby food jars contain milk or wheat, FYI...but who wants to eat pureed Chicken and Dumplings anyway? Ick.) but didn't make any major lifestyle changes.

When Evan was 10 months old, we were visiting my family while my husband attended work-related meetings in their area. I was feeding Evan his breakfast of rice cereal and peaches when I noticed that tell-tale rash around his mouth. Impossible, I thought....he had eaten rice and peaches dozens of times with no problems. I reached for the box of rice cereal....a new brand, but still just rice cereal, right? Wrong. There at the bottom of the Nutrition Label, in clear, bold print: "Contains: Milk" Oh. Shit.

By the time I looked back at my baby, he was covered from head to toe in hives. I yelled for my mom (naturally) and grabbed him out of the high chair. He began projectile vomitting. I could do nothing but hold him while he expelled the contents of his belly, became increasingly red, rashy, and hivey, and started to go limp. When he finally regained some control, I gave him some benadryl and called my pediatrician who told me: "He's having an allergic reaction that could potentially lead to anaphylaxis. Go to the Emergency Room."

Emergency Room?

Anaphylaxis?!

He, thankfully, did not experience breathing difficulties. His throat and tongue did not swell. We were lucky. This time.

We made an appointment at a pediatric allergist as soon as we got back home. After a skin prick test of 53 allergens, Evan's allergy list came back. He was allergic to: milk, egg, wheat, oats, peanuts, treenuts, green olive (olive oil), black pepper, and malt (derived from either corn or barley, malt is the result of a fermentation process and is used in flavoring: maltodextrin, for example, or "malted barley flour"). We were given an Allergy Action Plan and two Epi-Pens to keep with us at all times in the event of an anaphylactic reaction. And as it turned out, according to the allergist, all of those seemingly random infant issues (the colic, the eczema, the rashes, the scrunching, the sleep issues) were actually warning signs. If only we had known how to read them.......

Talk about a life style change. We got home from the allergist appointment and I opened the pantry. I burst into tears (again) as I realized how much work this Living With Allergies thing was going to take. We couldn't eat 92% of what was in there (I was still breastfeeding at the time and needed to immediately cut the allergens out of my diet, as well). Allergens were hiding in our cereals, sauces, boxed rice dishes, marinades, salad dressings, everything. I was going to have to go shopping....and worse: I was going to have to learn how to cook. Not just "make food," but cook. From scratch. And baking! Don't get me started on baking. How the hell was I supposed to bake my baby a First Birthday Cake with no WHEAT, EGGS, or MILK?!

So I went shopping. I spent a loooooonnnnggg time reading labels in the grocery store. I started researching. I learned how to cook and how to bake. I made a wheat-free, dairy-free, egg-free "cake" that I was able to stick a candle on and present to my one-year old boy on his Very Special Day (the rest of the party ate "real" cupcakes...you know, from a box). I found a great on-line community of moms of kids with food allergies who Get It (and who have already figured out how to cook, bake, and shop). And we learned that Living With Food Allergies really isn't that different from our former lives--we're just careful, and prepared.....and actually, healthier. We eat whole foods now--meat, veggies, fruit, potatoes, rice, etc. And aside from the occasional chicken nuggets or hot dog (Hebrew National are safe!), we don't eat a lot of processed foods.

Since our journey into allergies began, Evan's list has changed a bit. He has outgrown his allergies to wheat and oats. We believe his positive results for green olive and black pepper were false positives (no reactions). And we now know that his "malt allergy" is actually a barley allergy, and he can tolerate malt derived from corn. We've also added a few seasonal and environmental allergies.

Evan's Current List:

Milk
Egg
Peanut
Treenut
Fish
Shellfish
Barley
Cantaloupe
Dog
Seasonal

But there's good news: following the recent RAST testing Evan had, we have been given the green light to "challenge" egg. We'll go to the allergist's office in June with a couple of hard-boiled eggs and some guacamole to mix it in and let Evan have at it. It's scary to challenge a new food. It's probably kind of like letting your kid jump into the deep end for the very first time: He's had the swimming lessons, you're right there if he needs you, but you're giving him permission to do something potentially Very Dangerous.

So that's our story. We're a different family now than we were 2.5 years ago. We know things we never thought we'd have to learn (like, how to make vegan chocolate chip cookies, or how to stab our preschooler with a needle filled with epinepherine). I'm approaching food-introduction completely differently with Max than I did with Evan, and am dairy-free while nursing him. And as scary as Evan's one serious reaction was......I wouldn't trade this part of him for anything. It's just a part of who he is....

Lesson Learned:

I can't write anything definitive here....we're still learning as we go.........

4 comments :

  1. Hi Sarah. I am Sam's cousin, Leigh Ann. My second son, Henry, has a peanut allergy, so I understand how a food allergy can change your family's life. It is very scary to have to deal with just one, I imagine a whole list of them is quite overwhelming. We went through a similar scenario--colic, rashes, excema, hives. Henry is doing great now though--just finishing up kindergarten. He is really taking responsibility for himself--practicing to read ingredient labels by himself and recognizing so many of the foods that he can't have, always asking before he eats something. Can't believe we are where we are after so much anxiety, and tears (mine!) To Henry, it is just part of who he is and he is taking it in great stride! Will definitely keep Evan and your family in our prayers. It is wonderful that you are sharing your story for others to benefit from your experience. Love and luck to you!

    ReplyDelete
  2. Thanks, Leigh Ann! I definitely agree that it's going to be harder on us than the kiddos. It is getting easier as we go, though, and you're right...to Evan, this is just how it's always been. He "reads" labels and then says, "Yup! It's safe!" :) Thanks for reading, and thanks for the support! Hugs to Henry! :)

    ReplyDelete
  3. I found your blog after searching for Food Allergy Awareness Week. I am enjoying reading your allergy posts. My son has a severe peanut allergy. I know it can't compare to having multiple allergies. But, we still live in the same label reading, epi-pen carrying world. Wonderful allergy posts!

    ReplyDelete
  4. Thanks, Jane. The way I see it, all allergy moms are in the same boat: one allergy or many....it's scary either way. Happy FAAW to you and your family! :)

    ReplyDelete