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

Peanut explosion disrupts reaction-free week on vacation

As we prepped for our spring break trip, my husband said “let’s do this right and make sure he doesn’t have a single reaction.”  This relates to our string of experiences eating out over the past many months, as I discussed in my post on fear of restaurants.  Determined to avoid any displeasure, we planned and packed a significant amount of safe food and treats for the long drive to FL and back.  Very quickly into our trip, we realized that we could all enjoy our meals out so much more knowing he was eating what we packed.

So all was well and good.  Even our day trip to Legoland went well, again we packed his meals and he and we were happy.

But then there was the peanut explosion.

Back at my mom’s house, with my son’s siblings and 7 cousins, things were hectic.  So hectic in fact, that no adult took notice of two of the kids opening and eating a bag of peanuts on the porch and in one of the bedrooms.  There were peanuts everywhere, I mean everywhere.  Peanut shells, peanut dust, uneaten peanuts, in the crevices of the patio door, in the carpet, on a chair, on my son’s bed!

Did I freak out?  Almost.  I felt panic setting in, but I kept my cool and decided that I had to focus on clean up first.  My 7 year old who was part of the peanut eating frenzy was heart stricken when he realized the potential implications.  I think he was so thrilled to be somewhere that had peanuts!  In all fairness, and in full disclosure, I had seen the bag of peanuts on my mom’s porch the first day, and the adults all discussed that it would be best if we didn’t open them during our visit.  I obviously should have had those put away.  I’ve added it to my growing ‘live and learn’ list.

After an hour of cleaning up, including vacuuming, sanitizing, and changing the bedding, I was done, and pissed off — at myself and the kids.  I mean, couldn’t they have eaten them sitting in one place?  But also grateful.  Us adults kept saying we really got lucky.  With peanuts everywhere, who knew what could have happened!

My son did have a contact reaction from the peanuts; a swollen eye and hives, but luckily that is all it was. We failed at our goal of no food allergy reactions.  And yet I felt so very successful that in all the meals out he was safe, content and we were more relaxed than we have ever been eating out.

I’ll spend more time reflecting on what did go wrong, and surely put more effort to allergy-proofing our environment in the future.  And I’ll look for other people’s live and learn lists, so hopefully we can avoid other disaster prone situations in the future.

Food Allergies, Parenting

“Mom, if I eat all my dinner will my feet really grow?”

Today was an emotional day for my nearly 4 year old.  He didn’t get shoes, while his two big brothers did. I know, how traumatic for him.  Is it child abuse [insert significant sarcasm] to drag a child into a shoe store to watch his big brothers get brand spankin’ new summer shoes, while he wears the chalk stained pair that were acquired last summer?

“Mommy, [snif snif, lip quivering] I want a new pair of shoes, too.”  I plopped his whiny butt in a chair and said “if you are going to have a tantrum, you should at least make it a good one.”  But he didn’t.  It was annoying and whiny and never-ending.   The lady who runs the shoe store overheard it and finally said, “you know, if you eat all your dinner and go to sleep when your mommy says you should, your feet will grow, and THEN you can get a new pair of shoes.”

Dinner was comprised of a stew that was too spicy for my kids (in hindsight, I should have not added as many peppers,) fruit and bread.  The stew contained black beans, something this child has been allergic to.  However,  his allergist has advised us to push beans into his diet.  This child, who typically eats almost nothing for dinner, says, “mom, if I eat all my dinner will my feet really grow?”  And then he got weepy again.

Thanks lady.

I didn’t push it, since we don’t push eating at all in our house.   Typically I would have only expected him to eat his bread and fruit; he isn’t very adventurous with food and the stew was not something he would normally try.  But he wanted to eat it because he really wanted his feet to grow.  I think he ate at least a bite because he said it was really spicy.

And then I noticed that his ears turned bright red.  They are like our food allergy early alert system.  I asked him if he ate one of the beans.  He had said they “looked like jelly beans” earlier in the meal.  He didn’t know if he had.

And then after dinner he threw up.  I think he ate a bean.  We won’t be pushing them anymore.

My poor boy will just have to live with his year-old sandals that are perfectly fine and fit great.  And the lady at the shoe store needs to keep her advice about eating dinner to herself.

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.