Going Out to Eat with Food Allergies

Spontaneity goes out the window when you are allergic to foods.  So what does it take to go out to dinner or any meal when you have strict diet? Not much, frankly. But planning and calling ahead is key. Most people do not understand allergies, so a little explaining goes a long way.

Jahan, in your second year of life you have now decided to actually try pizza and you decided that you like it, (imagine that), well love it, we are venturing out to a local pizza spot. Taking a one and two year old out to dinner is a whole other adventure, but we are doing that too.

So what does it take?  So first off,  I found a restaurant that is "allergy-friendly" - they understand allergies (sort of) and offer items that are friendly, usually gluten-free (GF) and/or exclude the top 8 allergens (wheat, soy, eggs, dairy, nuts, peanuts, fish and shellfish).  Next, I call them during non-peak times. 2pm is a good time. I ask for the manager. I explain your allergies, what I would like for you to eat and ask for them to read the ingredients to me off every single item you will be consuming or offered.  After ensuring all ingredients will be safe, then comes the risk of cross-contamination. That means that other items that may have touched items you are allergic to then comes in contact with your food. For example, a spoon. Or butter that a utensil went into that previously touched wheat for example. None of that can happen - big no no, since we already know you have reacted this way.  Okay, so by now, the manager is either completely freaked out and tells me he/she cannot guarantee safety OR the manager is willing to accommodate and guaranteeing safety.  We like safety. Anything other than 100% is no go for us.   If safety is guaranteed, I tell the manager my name, when we are coming and that's it. Then when we arrive at the restaurant, I ask for the manager and all communications and expectations are set. I literally do this for EVERY SINGLE RESTAURANT. EVERY TIME. EVERY TIME WE TRAVEL. We have to live and venture out and explore the world. We will NOT put you in a bubble, so we take risks. We mitigate these risks as best we can, the only way we know how.

Cheers to pizza...and hopefully wine for mommy!

Raisins are the New Candy!

Another trip in the books. This time we went to Seattle for a family wedding. We stayed with Grandma and Grandpa Perry. These sorts of trips where we are staying with someone and have a kitchen on hand are super easy for us to make your food and ensure you are safe. This makes planning really easy.  Except when you have a reaction, which you did.

You and Greyson enjoying juice

It was Friday night and chili and cornbread was on the menu. Cornbread, made of corn right - not so fast, there is in fact wheat in many versions, not all though.  You and your cousin Greyson, who is about six months older than you were eating. He had cornbread and you did not. He even washed his hands. Then you two went about playing like you have known each other for years! Then as I am eating, Daddy was bathing Emrys, I hear that cough you have when you have a reaction. That dreadful, sudden iconic cough. I stop eating and sit by you and watch. I don't think anyone noticed at this point what I was doing. I certainly don't want to draw attention to something if it is nothing because I think many people that don't deal with food allergies are on edge or they think I am over the top and making the situation more intense than they think it needs to be.  Anyway, you did stop coughing after a few minutes, so I went back to eating.   Everyone, including Greyson goes home. You get your bath and then your coveted milk. And then I saw it on your face, projectile vomit. At this point I knew you had come into contact with something, likely wheat, since that was the only thing prepared that you are allergic to.

I clean up the stinky mess with Grandma's help while Daddy bathes you again, much to your displeasure. You already bathed, why again!? Daddy and I watch you for about an hour and nothing else happened. I know you didn't eat any wheat, but came into contact with a very very small amount. You are very sensitive now, which means we all have to be incredibly careful about wheat.

Sharing raisins with Great Grandpa

Fast forward a few days, to the wedding. I cooked your dinner before we went and ensured I had endless amounts of food for you. During the cocktail hour, you noshed on your safe snacks, sharing some with your Great Grandpa Perry all while Emrys was able to eat freely on the sesame chicken, bruschetta and whatever else Auntie Chantel wanted to feed him.  What a feeling to not have to worry. I long for this day for our family. The fear and anxiety is real and it's every damn day, every damn meal, every event, every party, everything. But we still live, fly on airplanes, go on vacation, have dinner dates, attend play dates, laugh, smile and eat.  We will not let food allergies control us, we control them.

Knocking on Death's Door: Anaphylaxis

With you having your first full blown allergic reaction requiring medical intervention to derail the possibly life-threatening symptoms, I am hearing the same questions from friends and family,

• What was it like?
• Did Jahan swell up like Will Smith in Hitch?
• Was he gasping for air?
• Did it happen after one bite? 
• How fast did it happen?
• How did you know you needed to use the Epi-pen?

I want to address all of these. 

I had a conversation with your daddy on Sunday night that took me well past my 10:30pm bedtime when I asked him if he thought your reaction to a mere 281 milligrams of wheat was a wake-up call to him, would he have used the Epi-pen had I not been there? Would he have called 911, gone to the hospital, etc. etc. Daddy did not correlate the symptoms that your were having with having a severe allergic reaction. He didn't want to use the medicine and DID NOT want to go to the hospital.  Scary right? But why didn't he recognize the symptoms, why no Epi? Why skip the hospital? 

Your first symptoms included coughing, nothing crazy, but an obvious sign that there was something going on in your airway. That progressed to you vomiting, which is a great thing.   30 minutes went by and coughing began again, heavier, more frequent. Then itching, then throat itching. This is when I knew we had to intervene. There were clear signs of a systemic response and airway distress. Daddy did not agree with me. I pushed, we called and gave you the Epi-pen. Your symptoms stopped almost instantaneously. Wow - it was that fast. 

Daddy, like many people, including myself, thought that the reaction that would require medical intervention would be really fast, like in the movies, and it certainly can be, but it doesn't have to be. Daddy thought you would swell up, be gasping for air and turning blue. None of that happened, it could have, but it didn't get to that point. The reaction was slow, 45 minutes after ingestion to Epi-pen. Daddy also thought that the Epi-pen administration meant, we are in the clear, that's your parachute to safety, well sort of, but not entirely.  The epinephrine, which is the medicine in the Epi-pen, without getting too technical, helps to stop anaphylactic shock.  The medicine works almost immediately and then can wear off after 20 minutes or so and the reaction can persist. That is exactly what happened to you my love. When you got into the ambulance, about 20 minutes after you were given the Epi-pen, smack dab in your left thigh, the reaction began again. Head to toe hives, huge and small, red and clear. All. Over. YOU.

One of the hives - after Epi, Benadryl, Pepcid and Steroid. The size of my palm

Recovering in the hospital, scared, latching onto daddy

Daddy, like many, thought the hospital was more of a burden then a necessity, that was until he saw the post-Epi reaction begin.  The hospital would monitor your vitals, provide additional medicine (epinephrine, steroids, pepcid) to derail any further reactions. 

Anaphylactic shock can present itself in many ways, but a few take-aways for us, our family and friends:

• Allergies are no joke
• When giving new foods, pay attention for up to four hours for a reaction
• DO NOT WAIT - give the epinephrine before blue, swollen shut and knocking at death's door
• Go to the hospital post Epi
• Every reaction is different than the next and previous

Angel, recovering, you are so resilient Jahan

TGIF! We're in the Hospital

Some lessons tonight. You are NOT ready for wheat. We can confidently administer your meds. Epi-pen is worth every damn cent they charge. 

Here's our update on our at home wheat challenge: You failed. miserably.  Coughing occurred 15 minutes after ingesting three mini pretzels. Then a vomit. We thought that would be it. It wasn't. Coughing continued which can be indicative of an itchy throat, throat closing, swelling, etc. I got Hopkins on the phone, they said the reaction appears local, give Benadryl. We did. Coughing subsides. 30 minutes pass and I am watching you like a hawk.  You begin itching all over. Itching your throat. This is not good. Now a systemic response and it's moving around. I call 911 and tell daddy to get you on the ground flat. I grab the $600 Epi-pen and swing it into your left leg. You are not crying...yet.  A few seconds pass and I realize I had to stab you my son, I did it. Whew. You begin wailing and I know the needle went in. EMTs arrive and off we go to the hospital. On the way you had a third reaction. Giant hives head to toe. We are at the hospital and safe. You, my baby boy, are iv'd up and feeling better now. You are chatting about the fire truck and ambulance, typical for a two-year old.

A Feat with Wheat is on the Menu

It's the cocktail hour prior to our cousin's wedding. Many of the cousins traveled from all over the states to be together and here we are at the big shebang in Chicago! All are dressed like they're at the Oscars, and not just attending, but actually receiving an Oscar, Angelina Jolie style. And all the cousins have been practicing for some time, to surprise the bride and groom with an Indian flash mob dance! So exciting, but yet we were all pretty nervous. We had some time though, and cocktail hour was sure to relax the mood.

You at the cocktail hour, loving that wheat pouch

Not so fast though.  I turn to you and  you are eating a baby food pouch, you love them, they are virtually baby-crack, but more healthy than that.

I look at the pouch as you suck every last drop out and my heart sank, panic set in.  The picture on the front has a grain on it, I grab the now empty pouch from you and turn it around to read the label. I briefly scan the ingredient list and boom, there it is, "Kamut (wheat)" - oh my goodness. How did I miss this?? I have never messed up before. I immediately grab daddy and tell him what happen. We decide to administer Benadryl before anything happens hoping to ward off any reaction.  You gladly take your "vitamin" - and then I go over to a little corner with you in my arms and cry. I deserve the worst mom-award of 2016! I feel terrible. How could I mess up when there is zero margin for error. Many cousins, some of which are doctors come and find me and give me some pointers to watch out for. Benadryl is kicking in and making you really sleepy, which it has never done before. It usually gives you a boost of energy. Now my little party-loving, dancing baby boy is passed out in your stroller and will at best miss the reception we have all been waiting for. The reception starts, dancing performances are on. I am watching your chest go up and down in a steady rhythm. This goes on for an hour. I feel terrible still. Our flash mob happens and the rest of reception goes on. I know everyone had the most amazing time at this beautiful celebration, but I screwed up. I did not enjoy these hours at the reception,  hoping and praying, watching you like an eagle scouting it's prey, that nothing would happen.

Sleeping in your stroller while the reception goes on

The reception ended, I took ouy up to our hotel and you slept, and I continued to watch. Nothing ever happened, which makes the allergy journey all the more confusing. Your iGe for wheat has hovered in the 30s and 40s, it's your highest allergen. But then nothing happened.

On mommy's shoulders at the Baraat, waiting for the groom

You and Daddy 

Fast forward a few months and an allergy appointment later and I get a call on Monday morning September 19th 2016, it's Hopkins.  The doctor tells me that they have researched the pouch and despite your high iGe numbers for wheat, they want us to try a wheat challenge at home. I am....over the moon, elated and scared.  Doctor gives me the protocol for the wheat challenge and tells me that had you not had that accidental exposure in April, we would likely not be challenging you. We would still be strictly avoiding.  So maybe I get a pass on this one, maybe I am not the worst mother of 2016.  Here we go...stay tuned for results!