Food Allergies, Parenting, Travel

Traveling in Nicaragua with Food Allergies

Quite simply put: when food can kill you, travel can be terrifying.

Thanks to my friend, Linda, a fellow food allergy mom (whose daughter was desensitized to milk through treatment at John’s Hopkins!  Yay!) for succinctly articulating this thought.  Linda has also traveled extensively with her daughter, and was a good resource for me before we left, and in the decompressing that needed to happen once we were home.

The short story:  8 nights in Nicaragua, brought our own food, had one troubling incident, made it home in one piece with no more than a couple of doses of Benadryl. Glad we went.  Slight modifications if I were to do it again.

The long story: [deep breath] I knew that trying to navigate food in a country where I don’t speak the language, or know the cultural issues around food allergies would be difficult. So we planned and planned and planned some more.  Here is what we planned:

1. We packed a suitcase full of packaged food to keep my son full for the week.  Shelf stable soy milk, dry cereal, crackers, cookies, Daiya “cheese” spread, bagels, margarine, dry pasta and so on….  It helped that we froze much of what we took, and then defrosted things as needed, so that kept the bagels going all week (though by the end, I didn’t think my son would eat another bagel for a year.)

2. We rented places that had full kitchens, so we could prepare hot meals for our son and feel safe.  It also meant we could refreeze our ice packs and store our cold items for the week.  This worked great, and allowed us  to make him his favorite “mac n cheese” (dairy free of course!), baked chicken and warmed bagels.

3. We brought along a lot of emergency medication.  Like 8 epi pens, tons of Benadryl and even filled a script of liquid prednisone (the steroid) after I had read that not all counties readily treat with that.

4. We had all of his allergy information, and key phrases like “he’s having a serious life threatening reaction to milk” translated into Spanish.  If something happened, we needed to be able to communicate it!

5. We bought emergency travel insurance.  I wanted the peace of mind that if we needed to get out fast for a medical issue, we’d have help.  The travel clinic where we got our typhoid shots before the trip told me that the travel insurance carriers were great resources for local medical help, too.  So we didn’t just buy the insurance, we printed out all the contact information and coverage instructions so we could be prepared.

6. We brought tons of antibacterial hand wipes, to clean hands plus surfaces on the airplane or in restaurants.  (Remember, antibacterial gel doesn’t remove food allergens!)

7. Most importantly, we were really careful.  We planned to be really careful.  At home, we eat out and we let our son eat restaurant food, once we’ve done the song and dance about cross contamination and all that.  But we decided that we would take no chances while we were traveling, and unless we cooked it, he wasn’t eating it.  This really bummed him out, but we stuck to our plan — except for the fruit smoothie we got him at the American-owned hotel Mango Rosa, where we were able to have the food allergy song and dance conversation with the American owner, and we went for it.  But then we felt stupid and remembered our plan and didn’t deviate again.

But like many well planned events, we failed to foresee every possible issue, and found ourselves in a bit of a pickle (I mean panic) while on an aging ferry on Lake Nicaragua on our way to the most remote place on our trip.

IMG_3752No sooner than we lifted anchor and found ourselves leaving land did my son start to show signs of an allergic reaction.  We were seated in the passenger area of the cramped ferry — broken seats everywhere, lots of holiday tourists on board, and vendors had been on board selling sunglasses and roasted nuts.  Yes, roasted nuts.  We hadn’t let my son sit down, for fear of the seats being contaminated, but he got hives on his face and neck and started to complain of an itchy throat.  He was scared.  We were terrified.  This all happened within minutes of leaving the port.  I had him outside in fresh air immediately, washing him down with those handy wipes, dosing him with benadryl and counting epis in my head while I imagined having to ask them to turn the ferry around.

For all the adrenaline and fear I experienced, the whole thing resolved itself almost as fast as it came on.  But from that moment on, I was berating myself for putting us in this position.  I mean, what was I thinking taking my FAMILY to this remote place?  How could I bring my allergic son to someplace SO FAR AWAY?  And even though we had identified before our trip that there was a hospital on Ometepe Island, I was sick about the might-ofs that were running through my head.

My darling husband was calm once we were off the ferry (under an hour on the ferry) but I wasn’t calm until we had finished our three night stay on the island and were safely back in the more developed, modern city of Granada.  On the return ferry, we never took our son inside, and found a quiet spot on the deck to ride out the trip back to the mainland, and it was a blissfully uneventful trip.

IMG_3795The only other point of nervousness for his safety came, ironically, when we visited the active volcano outside of Granada.  Now, we weren’t nervous about the VOLCANO erupting (though in hindsight, I seriously brought my family to an active volcano!?!?) But, the air is thin and the sulfur from the volcano can make it hard to breathe.  I had trouble as we ascended the volcano (by car), and only then, in that moment, did I realize that I had failed to pack my own inhaler AND MY SON’S inhaler!  Oops.  Asthma is not a chronic problem for him (it is more an issue for me) but I really had thought that it was in our bag, but it wasn’t.  Luckily, there was a great breeze at the top and we all had good clean air to breathe.  Problem averted.  But next time I would definitely pack the inhalers!

Next time?  Well, we’ve been home a few weeks, and I’ve had time to reflect on our trip, and have asked myself many times, “would I go again?”

Yes.  I am glad we went. I would go to Nicaragua again with my food allergic son.  I would still do all the planning we did, but I would not go on the ferry.  It was too remote.  It was too “developing” and I was so unprepared for airborne tree nut particles causing a reaction!  I know that the unexpected can happen anywhere, but if it is to happen, I don’t want to be on a remote ferry in the middle of Lake Nicaragua!

Ask my son, and he’ll say he loved Nicaragua, but he has asked “next time can we please go to an English speaking country so I can eat in a restaurant?”  And that just breaks my heart.  Should we have brought food for all 6 of us? Should we have totally avoided eating out (where we’d bring his food that we’d prepared?)  It just isn’t practical, especially when part of our purpose of travel was to expose our kids to the food of Nicaragua.  But I do wish that he could have been more free to get more smoothies, or to get allergy safe pancakes or other special “restaurant food” that the other boys got.  We made sure he got plenty of treats, but they grew less and less special as the trip wore on, and he was sad that he couldn’t eat like everyone else.

What my darling son doesn’t know is that even if we went to an English speaking country, it doesn’t mean we’d be any less vigilant; and it doesn’t mean we’d even let him eat in a restaurant (unless we could understand the cultural issues around food allergies.)  We are seriously talking about traveling to India next time (English speaking yes, but I would not be comfortable with food prep/handling/cross contamination in the kitchens there.)

I would love to hear from other food allergy parents about their experiences traveling abroad!  Happy travels.

Food Allergies, Living Life

Dairy Free Chocolate Lava Cake (To Die For!)

chocolatemoltencake214 1/2 years ago my darling husband proposed to me over a decadent chocolate soufflé at a local French restaurant.  For our annivesary yesterday I intended to try my hand at the classic dessert for the first time!  However, as I researched recipes and considered my options, I worried that converting a classic souffle to dairy free would leave me wanting.  We aren’t always dairy free, but for special desserts, we don’t want to leave out our youngest son, who has multiple food allergies.

So, I found this mouth watering recipe from Paula Deen, and converted it a bit.  Even though I’m no professional chef, I would venture to say that my recipe was amazing. My kids loved, I loved it, and my husband loved it.  Each individual serving is rich, smooth and satisfying.  Though we about polished off our own servings, we could have easily shared one!

Now, I know this isn’t 100% in-line with our new real food way of eating — I didn’t quite have the nerve to substitute honey for the powdered sugar, but otherwise the recipe is real! I have substituted honey in other sweet desserts with no difference, and as soon as we use up what little powdered sugar we have left in the house, I will only use honey.  I would guess that this would have been just as delicious, so now that I think about it, I’m not sure why I didn’t try!

My modified recipe, with my changes highlighted in red. 

INGREDIENTS:
4 (1-ounce) squares unsweetened chocolate
4 (1-ounce) squares semisweet chocolate
10 tablespoons coconut oil
1/2 cup  whole wheat flour (I use King Arthur’s White Whole Wheat)
1 1/2 cups confectioners’ sugar
3 large eggs
3 egg yolks
1 teaspoon vanilla extract
1 teaspoon orange extract

DIRECTIONS:
Preheat oven to 425 degrees F.Grease 6 small ramekins with olive oil spray and dust with cocoa.  Melt the chocolates and butter in the microwave. Add the flour and sugar to chocolate mixture. Stir in the eggs and yolks until smooth. Stir in the vanilla and orange extract. Divide the batter evenly among the ramekins. Place on a cookie sheet in the oven and bake for 14 minutes. The edges should be firm but the center will be runny. Run a knife around the edges to loosen and invert onto dessert plates. Dust with powdered sugar.
Food Allergies, Living Life

Baked Egg Challenge Success

Relief and joy, that is what I feel, the morning after my son passed an in-office food challenge.  Over the course of 90 minutes, my son ate increasing amounts of cupcake made with REAL EGGS.  Not only loving the homemade chocolate cupcakes, my son ate them without any reactions!  He was happy, but didn’t seem to fully understand the significance of the event.  At not quite four years old, that isn’t shocking.  But he did register MY excitement, and had fun telling his brothers and dad and teachers and friends the news “I am not allergic to baked eggs anymore!”

Sent home from John’s Hopkins with instructions to feed him baked egg products no less than four times a week, I am now facing the need to bake and bake and bake.  Good thing I love to bake 🙂  I also need to find recipes that call for more than 2 eggs, unless I want my son to be eating 4 cupcakes at a clip, we need to pack more egg into our baked goods.

If all goes well, after 2 or 3 months, we’ll progress to cooked egg – like pancakes or french toast or battered chicken.  Then, maybe 9-12 months from now, we can introduce direct egg.

The other amazing news from our appointment yesterday, Dr. Wood said that he will “certainly outgrow his milk allergy.”  That is HUGE.  More HUGE than eggs to me, since milk has been the source of his worst reactions!  In fact, his IGE levels came down on almost every food that he is allergic to.  Unlike last year’s pronouncement that his nut and peanut allergies were certain to be lifelong, Dr. Wood reversed that yesterday saying that although the odds are not in our favor, he won’t rule out the possibility of growing out of those allergies as well.

It is difficult to express the kind of relief that this news brings.  We have been in full swing allergy management mode for 3 years.  Not a meal goes by that prevention isn’t at the forefront of our thoughts and actions.  Though we have hit a stride with managing allergies, there are times when the worry is overwhelming.  Food allergies are limiting, and dealing with them is all consuming, so the thought of moving past them is amazing.

Even moving past ONE allergy is amazing.  One less thing to read for on labels, one less item to overwhelm caregivers, and one less food that limits his being able to eat what others are eating.

Baking with eggs is going to take some getting used to, having only been vegan baking (and loving what I made!)  Now I sign off to begin researching egg heavy recipes, and to get baking.

Food Allergies

Dreaming of Baked Goods Made With Real Eggs!

I can bake delicious cakes, muffins and breakfast treats that are vegan.  Not because we live a vegan lifestyle, we are happy carnivores, but because our youngest son has food allergies to egg and milk (among many other.)  For three years I have been making everything baked from scratch, and have learned some tricks for creating delicious replacements for all our favorites.  And even though I’ve become skilled in the art and science of vegan baking, I haven’t grown used to the absence of eggs in our recipes.  While everything tastes great, eggs provide a fluffy quality to baked goods that is hard to replace.  I have learned that using my stand mixer at a very high speed introduces enough air into the batter to help cakes rise a little bit.  But even then, the baked goods are very dense.

For the first time in years, now I am dreaming of baked goods made with real eggs!  That is because my son has been cleared for a food challenge using baked eggs!  It is Thursday, and I am both thrilled and nervous.  My son is almost 4, and should he tolerate the baked eggs at the food challenge, his birthday cake will be fluffy in June!  I’m trying not to get too excited about the implications, it is very possible that he won’t tolerate the egg and we will have to continue to avoid them.  My real goal is that he comes out of the food challenge with a good attitude, either way, and isn’t discouraged about his allergies any more than he already is.

My son has requested cupcakes for the food challenge, and the allergist suggested bringing in icing and decorations to help pass the time while there.  I’m torn about making the flavor he loves most, in case the challenge isn’t successful, I don’t want a negative association with chocolate cupcakes, or to have leftovers around that he would long to eat but couldn’t.

While I am worried about the emotional impact of the food challenge, I am not concerned about his safety.  Our allergist at John’s Hopkins University is a leading researcher on food allergies, and even oversees treatment studies to desensitize kids with severe food allergies.  Two of our nephews are also patients there, and one has completed the milk treatment study and is now enjoying all things milky, especially I am told, the Dorrito Tacos at Taco Bell!  The other nephew is in the egg treatment study.  And another friend of the family has a daughter who was anaphylactic to milk and is now cleared to eat anything with milk that she wants.  This research is what makes Hopkins so attractive to me.  I have said from diagnosis that if our son doesn’t outgrow these allergies on his own, we’ll try to get him accepted into the treatment studies.

In preparation for the food challenge, we have stopped his daily allergy medication that he uses to keep seasonal allergies at bay.  The timing is unfortunate as pollen counts are very high all week, but this is necessary for the food challenge, so any reactions to the food won’t be masked by the antihistamines.  And we are planning for many hours of boredom, in the hopes that the food challenge goes well and we will have to occupy ourselves with books and games and activities.

Please think good thoughts on Thursday, and know that I will certainly post the outcome as soon as I can.  And if all goes well, I think we’ll have a celebration next weekend, and everyone is invited for cake, made with real eggs!

Food Allergies, Parenting

Food Allergies and Fear of Restaurants

We keep EpiPens with us at all times in case of a serious allergic reaction.

Two days a week I get my nearly 4 year old all to myself.  The other three he is in school and I’ve been working.  This bi-weekly affair delights both of us!  With only a few more months of these special days left, we really do make the most of them. (In the fall, he’ll go to preschool 5 mornings.)  Our typical days include the mundane like chores and errands, but also the fun like playing Candyland and extra cuddling.

Last week, on one of these special days, we took a dear friend out for a birthday lunch, but I brought safe food for my son.  Lately he’s had some unfortunate experiences at restaurants.  I’m still not recovered emotionally from these screw ups.  And as his parent, I need to take full responsibility for everything that goes in his mouth.  In that regard, I’ve let him down.

In January while away for a special family get-away at an indoor water park, he had a very serious allergic reaction.  The restaurant screwed up; gave him pancakes with  milk in them even though they had thought they were making something safe.  After 2 small bites, he was reacting.  We ended up giving him an epi pen (epinephrine) for the first time —  and then spent a long 4 hours in the ER.  Even after an epi and high dose Benadryl and steroids in the hospital he got hives.  He was in good hands and actually enjoyed the hospital experience, but says that getting the epi and getting sick at the restaurant was “very scary.”

Following that experience, we had a birthday dinner for his brother at McDonald’s,  and he asked us to bring him safe food from home.  It made us realize how aware he was of the possibility of getting sick while eating out.

Fast forward to early March.  We ventured out to a tried-and-true restaurant in our neighborhood.  He ordered his safe meal.  And he had a reaction.  Luckily this was more mild physically but it did scare him (and us).  Even “safe” food can become very unsafe if not handled properly while being prepared.

All of this is why last week he asked for me to bring him food from home. He’s afraid.

I’m scared too.  And I’m pissed. And I’m bummed.

The worst part last week wasn’t the pain-in-the-rear of bringing food from home.  It was that he was scared.  He asked to stay in the car.  He cried as we walked in.  He associates restaurants with feeling sick, and that is both a sad and a necessary reality for him.  And yet, while we want to teach him to be wary of food that isn’t in our control, we want so desperately for him to be included.