Preparing For A Food Challenge

It’s hard to believe we’ve come this far.  Tomorrow, N will have a food challenge for the very first detected food allergy!  Tonight I’ll be cooking some oatmeal to take to his fourth food challenge.  In January he had a soy challenge, the end of February he did a baked egg challenge, and in June he had a cherry challenge.  I know the doctors say there is no correlation between what a pregnant woman eats and what their child is allergic to, but I ate oatmeal AT LEAST once a day, sometimes two.  I love the stuff, and I’m praying that he passes the challenge-so he has more food options and so he can enjoy such a healthy food.

I feel like an old pro with this being our fourth challenge, but I have to admit I’m still nervous.  N’s original reaction to oat was a come-and-go rash on his belly with itching, and he never had hives….so, I’m hopeful that tomorrow will go well.  Here’s how we prepare for a food challenge….

1.  No anti-histamines.  N isn’t allowed to have any anti-histamines (like Benadryl) within the four days before the challenge.  Check with your own doctor on their rules on this.  We are super careful with his food (like always!) so he doesn’t have any weird reactions that require Benadryl.  We don’t try any new products that appear to be safe in the 4 days before the challenge, but that’s just our thoughts.

2.  Pack the food to be challenged.  We’ve done Silk Vanilla Soy Milk, eggs baked in muffins, fresh cherries, and tonight I’ll make oatmeal sweetened with brown sugar and a bit of Earth Balance soy free margarine.  I’m doing instant oatmeal for two reasons:  I think it’s mushy and I’m worried about cross contamination with nuts….and because I already have 2 canisters of old-fashioned oats in the cabinet.  Your doctor may give you specific items to bring for a challenge, so just ask if you’re not sure.

3.  Pack some entertainment.  We usually take a portable DVD player, the iPad, and books.  I let my son pick what movie/DVD he wants to watch so that he’s happy.  Challenges typically take 2-4 hours so movies are good.

With his DVD player at his soy challenge

With his DVD player at his soy challenge

4.  No food/drink after midnight.  Our doctor says no food or drink after midnight the night before the challenge.  Check with your doctor for their rules on this.

5.  Pack a lunch.  After the challenge your child will most likely be hungry, so pack a favorite lunch or plan to go to a safe restaurant to fill that hungry tummy.

What should you expect during a food challenge?  Here’s some basics from our past 3 challenges:

*An initial check of vitals

*Increasing amounts of food/liquid every 15 minutes

First bite at baked egg challenge

First bite at baked egg challenge

*A check of vitals every 15 minutes before they eat the next portion

*Staying in the same room during the challenge (other than bathroom breaks as needed)

*Waiting after the last portion is eating-this may vary from 30 minutes to an hour

*Be prepared to be with your child the rest of the day.  We have always been advised to be aware of a possible reaction for 6 hours past the last portion ingested.

Here are a few more tips to make the day go smooth….

*Prepare your child by talking to them about what will happen.  It’s up to you whether to warn them that an Epi-Pen shot is possible if things don’t go well.

*Ask to rub the allergen on an arm first to see if there is a contact reaction-this can save some time and agony!

*Take your spouse or supportive friend/family member.  Extra support is never a bad thing!

*Leave siblings at home, especially young ones.  You’ll need to focus on your child doing the challenge, not be distracted by entertaining your other children or having to change diapers.

*Ask questions before, during, and after if you’re unsure about something.

*Stay calm.  You’re in a monitored environment with trained professionals, so no need to freak out and pass that anxiety to your child.

*Remember, I’m not your doctor, but I can share experiences.  Talk to your allergist for the final word in your situation, and don’t use this blog post as medical advice.

*Never do a food challenge at home-it’s just not wise!

I’ll leave you with one of my favorite pictures from a previous food challenge…..He was so proud to take his paper mustache from story time the day before…

MustacheEggChallengeHe’s grown up so much since then!

Let’s hear from you food allergy moms….what are your thoughts or tips on food challenges?  

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I Love Stuff….That Makes Food Allergy Life Easier

I am really striving towards simplicity lately, because it keeps me much calmer.  Except shoes.  The more the merrier.  You too, huh?  Allergies, on the other hand, don’t have such a place in my heart.  But, if it’s something that helps this allergy journey a little less painful, a little more tolerable, or even a little more manageable, then who cares about simplicity?  I say, “Bring it on!”  Here’s a few things that help our daily life, and definitely made our  vacation activities possible.

1.  A waterproof container.  When we go on our vacation to the lake house, we float down the river to the ice cream shop at least twice.  Obviously we have to take my son’s Epi-pens as well as his inhaler, so we put it in a waterproof bag.  Last year the one we used leaked a little, so we had planned on just using Ziploc bags inside this same waterproof bag.  Instead, my sister-in-law, Jenny, let us borrow her new Aquapac, which she had purchased to protect her tablet at the beach.  It was perfect!  There was enough room for a twin pack Epi-pen, an inhaler & spacer, and still had room to spare.  We had Benadryl meeting us at our destination, so we didn’t send that along for the 35 minute float down the river.  The Aquapac worked really well, and I recommend it for those of you going to beaches, pools, spending time on boats, or anything that involves water.  You could even throw your small tablet or cell phones in it.  Thanks to the Aquapac, floating down the river safely was possible!  My husband is the one in the blue shirt, and he had the Aquapac over his shoulder, and N is in his own little floaty.

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2.  A Frio Cooling Wallet.  This summer we’ve gotten much more diligent about keeping our Epi-pens at the proper temperature by not letting them get too hot.  We spend a lot of time outside, so we opted to get the Frio Cooling Wallet, which is originally used for insulin.  It works perfectly for Epi-pens!  We have the Frio Duo Cooling Wallet, and it’s an exact perfect fit for a twin pack Epi-pen.  Once the cooling pack is activated it puffs up a bit and so I have to push the Epi-pens down in the sleeve, and it’s snug.  Do-able, but snug.  If you want it roomy, get the Large so you have plenty of room for  your Epi-pens and maybe something else.  We have two, one for the diaper bag and one for N’s mini-back pack for when we don’t have his sister’s diaper bag with us.

3.  Insulated Lunch Box.  We love our Bento Laptop Insulated Lunch Box with the Bento Buddies Containers.  Awesome lunch box.  Love it, ’nuff said!  The Ziploc brand lunch containers fit perfectly in a Bento lunch box, and are probably much cheaper than the Bento version.

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4.  Bug Repeller.  We used Jason brand natural bug spray and the Off! Clip On Bug Repeller.  We had no allergy trouble with either product, but do your own research, as I only researched for our particular allergy set.  I’d love to make my own bug spray sometime, but until then, these two things are doing the job when the mosquitos are trying to suck the life out of us!  I know this isn’t food allergy related, but we used it a lot on vacation, and I’ve heard of people having some pretty nasty reactions to mosquito bites.

5.  A mini backpack.  We use a mini backpack when just my husband or I take N by himself and just need his Epi-pens, inhaler & spacer, and Benadryl.  He’s too young to self-carry his Epi-pens, so this was a gender neutral alternative for my hubby and I.  We have another set of these things in the diaper bag for when the whole family is together.  The mini backpack is also big enough to put a few light snacks and a small water bottle.

6.  Safe Sunscreen.  We use Coppertone Kids Pure & Simple and N has done really well with it.  It doesn’t have any peanut derived oils that I am aware of, which so many sunscreens do.  It is also oat free, which is something else that is common in lotion type sunscreens.  It’s affordable and even makes the EWG’s list of best sunscreens with a rating of 2, meaning it is a minimal hazard to use.

Then there’s food products that I love, but I think that’s going to have to wait until another post.  I hope this list of products help you manage your family’s food allergies when you’re out and about .  They sure have helped make outdoor fun-in-the-sun much more attainable while staying safe!

Alright Allergy Moms (& Dads!), what are your favorite products to make life with food allergies less of a pain in the neck?  Leave a comment and share your awesome ideas!

To Epi or Not to Epi? That is the Question.

Last week at our local food allergy support group there was a sales rep presenting the new Auvi-Q epinephrine injector.  I LOVE the idea of a talking injector to walk you through what can be a very scary experience.  I’ve had to inject Nathan once with the Epi-pen and it was pretty scary.  More scary was the dialogue in my head debating whether or not he needed the injection or not.  If I didn’t inject him with the epinephrine, we were gambling big time with his life.  I wasn’t willing to do that.  Here’s what happened.

Let me just say, that even as diligent and cautious as our family is with my son’s food, sometimes it takes more than one of us to read new food labels, especially if we’re tired.  Or, how many of you have Almond Breeze milk sitting next to Rice Dream milk in the fridge and almost grabbed the wrong one?  Their containers are very similar (both blue) and I’ve almost grabbed the wrong one a couple of times.  In our particular situation, he was handed the wrong kind of cheese.  American cheese singles are very similar in color to Rice/vegan cheese singles.  We quickly realized the problem, and he had only taken a few bites.  Still, the hives came on pretty quickly, and so did the adrenaline racing through my body.  This was the first time he actually ATE dairy since his diagnosis.  I panicked. I whipped out the Benadryl and gave him a dose.  I actually had no idea if he was anaphylactic to dairy at this point, but I always assumed he was.  After an eternity (OK, probably just a minute or two) of watching him, the hives were still there and there was slight swelling of his lips.  I think I remember him coughing maybe once, but nothing too crazy.  The Benadryl just didn’t do enough fast enough for my liking, and between that and the slight swelling I did what I had hoped I never had to do.  He never was struggling to breathe, but I sure didn’t want the situation to progress that far.  Out came the Epi-pen and in 15 seconds the whole process was done.  It’s amazing how fast epinephrine works.  It’s amazing how fast I didn’t calm down.  I know I cried more than he did, and rightfully so-it’s a hugely emotional situation.  I was so scared, but more terrified of the outcome if I didn’t inject him.  When relaying the situation to our allergist at our follow-up appointment he said, “You did the right thing”.  Doing the right thing was so worth it-unnerving, but worth it.

Here’s another situation for you.  A friend recently had sushi two days in a row.  After the second day of having the fish with the sushi, she broke out in hives and was having esophagus spasms.  She took some Benadryl and went to bed, setting her alarm to wake up for the next dose.  By the next morning she was texting me, letting me know her lips were swollen along with the hives, and was heading to the ER.  They promptly gave her epinephrine, Benadryl, and prednisone.  Within a couple of hours she was heading home.  The only differences in this situation was that this was a slow, almost delayed reaction.  In some ways, I’d almost describe this as a biphasic reaction, but again, I’m no expert.

In both instances, there were at least TWO symptoms.  I am not a nurse or doctor, just another food allergy mom, but that is what I’ve been taught by our awesome allergist, and what I’ve always read.  I recently saw a visual guide originally from Allergic Living Magazine that outlines anaphylactic symptoms, as well as what to do after administering epinephrine.  Click here to see the guide and print it out to share with family and friends.  While you’re at it, print one for your refrigerator.  I’ve already printed mine and mailed it out to my sisters-in-law that wanted more info on our little man’s allergies.

How much does the general, non-allergic public know about anaphylaxis?  I just put out a quick survey on my personal Facebook page, wanting to know how much non-food allergy people know about anaphylaxis and administering Epi-pens.  Here it is….

Quick survey….WITHOUT using Google or other help, answer the following question. If you answer, I may use your (anonymous) answer on my next blog post.
What are the symptoms of anaphylaxis that needed an injection of an Epi-pen?

Here are the answers I received….

Response #1:  When I was getting allergy shots, I had an anaphylactic reaction (I know right?) Since it was at the allergy doctor’s, it wasn’t an actual pen, but I did get a shot of epi. What brought it on was a feeling of being far away and voices were very faint, I felt like I couldn’t swallow…felt like something was stuck and I couldn’t swallow it down or swallow around it. Also my palms and scalp got very itchy. By that point I’d flagged down someone and they gave me epi. It happened a 2nd time, and I had the same symptoms, only they manifested much quicker the 2nd time.

Response #2:  Shortness/loss of breath, swelling, sound becoming faint/roaring in your ears, weakness, redness, feeling faint, wanting to close eyes… I’m sure there’s more, but those are my reactions and why I’ve used my epi on myself.

Response #3:  Facial swelling (or other significant body swelling), respiratory distress, esophogeal tightening, or a reaction that involves two or more body systems. Coming from a person who just had my first ever allergy reaction.

Response #4:  ….sneezing and having trouble breathing by the second sneeze, and I immediately realized she was having an allergic reaction…

Response #5:  Swelling of the tongue or throat, difficulty breathing, “itchy” throat…

Now, all of these individuals except two have experienced anaphylaxis themselves.  Regardless, in all responses there were at least two symptoms being described, and that is my point with this post.  I want people to be aware of the symptoms and be ready to administer the Epi-pen first if it’s needed.  Something else to remember is to ALWAYS carry TWO Epi-pens or Auvi-Qs.  Why two?  The first one may malfunction, or if medical help has not arrived within 15 minutes and symptoms are still present you will need to administer the second injection.  I can’t stress enough the need to keep that epinephrine RIGHT THERE all the time.  As my son has gotten older, we now have his own “Epi Bag” that goes with him if our daughters diaper bag is not with him.  I currently carry is Epi-pens, Benadryl, and asthma inhaler, as I don’t feel he’s old enough to do that himself.  We are getting into a really good habit of keeping that bag with him at all times, or within a 60 second distance.  For example, if we’re playing at the playground, the Epi Bag or diaper bag is in the stroller at the edge of the playground.  Or, if he is going to the barn with his Poppa, the Epi Bag goes with them because it’s a 2 minute walk to the barn.  In the past few months, I’ve read too many articles of anaphylaxis deaths-three to be exact.  Why so many?  They did not have their Epi-pens with them, or in one case it was a first time reaction.  Bottom line?  Epinephrine saves lives.  Know how and when to use it, and don’t be scared to use it.  The outcome of not using epinephrine is way more scary.

Disclaimer:  I am not a doctor.  The information here is what I have been taught and learned in our food allergy journey.   Do not use this information in place of medical care.  If you are having an allergic reaction emergency, call 911.  

Lasagna, Cake, and Ice Cream, Oh My!

This weekend we attended a birthday party for one of our family members.  Nathan was so excited to go to a party and see his cousins.  Thankfully, all of his cousins (and their parents) are really good about remembering his allergies.  They are very accommodating and wash their hands after they eat and before they play with Nathan.  If they forget, we just remind the kids to wash up before playing.

Parties are a whole new ball game for those with food allergies…..and especially their parents.  Once Nathan turned 3, he was definitely wanting to go off and play with friends or cousins at birthday parties.  This can be absolutely nerve wracking for us as parents.  Think about it.  There’s usually tons of kids slathered in ice cream, icing, cheese, and often times nuts.  Depending on where we are and if we know everyone or not, we just can’t ask that every kid suds up after eating.  Skipping every party, and staying home isn’t an option either.  Even food allergic kids have to have fun and, most importantly, have to learn to manage themselves in an often unsafe world.  My husband and I often take turns watching the kids play  or checking in on Nathan to make sure he’s fine.

So, what’s a stressed out mom of a food allergic kid to do?  Spend a handful of hours before the party making safe lasagna and cake, and packing up all the trimmings!  I think it’s really important that Nathan help in the kitchen to learn basic skills, but also to realize what needs to be done to keep him safe.

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We were short on time today, so we are using a Cherrybrook Kitchen Yellow Cake mix.  I usually make cakes from scratch, but this time we took the easy way out.

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I even opted for the hand mixer so Nathan could have a turn.  He likes this, but what he really loves is licking the beaters after we’re done!  Don’t be afraid to include your kids in the kitchen, no matter what their age or allergies.  Nathan has been helping me in the kitchen since he turned 2.  There are a lot fewer messes now!

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His favorite part!  Even food allergic kids should get to lick the beaters and spatulas!  I remembered doing this as a kid, and it brings back lots of memories helping my mom in the kitchen.

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If you haven’t checked out Cherrybrook Kitchen’s products, you need to!  They are dairy, egg, and nut (peanut, too!) free and you can read their allergen statement here.  They also make ready made frostings that are safe.  I haven’t tried the ready made frosting yet, but a couple of months ago we tested the chocolate frosting mix and it was really tasty!

To take to the party, I also made a safe lasagna made with dairy free cheese.  This is pretty easy, thankfully!  It’s just a basic lasagna, made with what Nathan calls his “safe cheese” instead of regular mozzarella.

Here are some things we do for parties to make them as safe as possible and high on the fun factor for Nathan:

1.  Take a safe meal.  I always ask the host what they are having and make Nathan’s version.

2.  Take plenty of baby or antibacterial wipes.  Treat this as a restaurant situation and wipe things down if you need to, especially hands before and after meals.

3.  Talk to your child BEFORE the party.  Remind them not to take food off of tables or plates, and only accept food from you or other designated individuals.  You may want them to wear an allergy alert bracelet or t-shirt at especially large gatherings or a new place.

4.  Show your child unsafe food.  I sometimes take Nathan to foods that he may not recognize and remind him they are unsafe for him.

5.  Make it known.  Talk with other guests, especially if they ask questions.   This is often a great time to say, “Would you mind having your child(ren) wash their hands after they eat ice cream and cake?”  Most people are really accommodating and will comply.

6.  Take two Epi-pens and Benadryl….EVERY TIME!

Enjoy those summer parties!

What’s That Smell?!…..Our Journey Part 3

What’s that smell?!  Oh, that’s the eggs baking in the muffins.  I hadn’t baked with eggs in over three years, and I have to admit….it smelled disgusting.  But it was exciting.  There I was in the kitchen the night before Nathan’s second food challenge (woohoo!) digging through my Betty Crocker cookbook, and mixing up a batch of  “real” blueberry muffins.  Once the batch was in the oven and the aroma filled the house, it just smelled weird.  I almost couldn’t handle it.

Nathan was again so excited to be trying something new!  This food challenge was even more exciting to him because he actually got to eat something, rather than just sipping soy milk.  With a food challenge, the patient goes in with an empty stomach…basically so there’s not much to throw up if they have an adverse reaction.  He was definitely hungry and those muffins looked so good to him.  Here he is waiting for the doc to come in to get us started with those muffins.  Don’t ya just love the mustache prop that he got at story time the day before?

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It was about 9:15 and the egg challenge was under way.  I was nervous, but still hopeful that this would open up yet another new food in Nathan’s diet, even if only in the baked form.  Studies are showing that if an egg allergic person can tolerate baked egg, then it may help them fully overcome an egg allergy.  That’s how I understood it from our allergist, anyway.  The first 1/8 of a muffin was down the hatch, and Nathan settled back in to watching his movie.  Tip:  If you ever get to do a food challenge, take lots of things for your child to do, especially if they are young.  Food challenges take at least 2 hours so keeping them busy can be a challenge in itself.

Every 15 minutes the nurse would come back and check Nathan’s vitals.  First check?  Everything is good.  Let’s move on to 1/4 of a muffin.  Down the hatch.  This boy is hungry.

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After the next 15 minute check, Nathan got sleepy, and wanted to hug on my arm, but was ready for more.  “My stomach hurts”, he said, “and it’s snowing outside guys!”  Gotta love the train of thought of a 3 1/2 year old!  I got a lump in my throat, and I got a bad feeling, but the doc thought all was still OK so we went for the 1/2 of a muffin.  Nathan started eating this portion, and unfortunately I had to head home to pick up our daughter.  My husband stayed with Nathan and they started watching his movie again.  Another 15 minutes had lapsed, and the nurse opened the door to come in for his vitals check.  Hives.  She saw the hives that my husband didn’t see since Nathan was sitting on his lap.  By this time I was at home with Julia, and texted the hubby to see what the status was.  No reply.  I comforted myself by assuming he was just chatting with the allergist.  Sadly, I was wrong.  I knew I was wrong, but just didn’t want to believe it.  A mother’s instinct is soooo strong.  Brent finally called me, explaining that by the time the allergist came in to check Nathan he was sneezing, had hives and was itchy.  The nurse had to administer Epinepherine to stop the allergic reaction.  Thank goodness we were at the doctor’s office and not at home.  I will NEVER do a food challenge at home.  The experience was scary, but could have been deadly had we been at home.  We were disappointed that he couldn’t have baked eggs, but thankful that he was OK.

What’s the scary part?  Had he been experiencing those symptoms at home, we probably would have just given him Benadryl.  Well, maybe not.  I did have to give him the Epi-pen at home once after he accidentally ingested cheese, and the symptoms were almost identical.  Having to give an Epi-pen is a terrifying experience, but the alternative is even more terrifying.  When should you give an epi-pen? When there is more than one body system involved.  Hives and sneezing, like in Nathan’s case.  Breathing problems and lip and mouth swelling is another combination needing an epi-pen.  There is often more symptoms that need to be addressed.  Throw vomiting or lethargy into the mix and you’ve got yourself a full blown anaphylactic attack.  Scary stuff.  If you want more info on how to treat an anaphylactic reaction, visit www.epipen.com or www.epipentraining.com

This reaction to eggs was so surprising to us.  Nathan’s blood test results for soy came back at around 2.0/100 or less.  So did his egg numbers.  No reaction to soy, but anaphylactic to egg.  That just goes to show just how crazy food allergies are, how unpredictable they are, and how the “numbers” from blood tests can’t prove what kind of reaction someone will have.  Our allergist was just as surprised as we were that Nathan reacted.  This is going to sound weird, but I’m so glad we did the egg challenge.  Now that  we know how he reacts, we will be even more careful with him around eggs, reading every label multiple times before something new goes in his mouth.

I’ll end this longer than expected post with this adorable picture of Nathan coloring his EggNots at Easter this year.  They’re made of ceramic and are dyeable and can be decorated just like regular eggs….without the fear factor.

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Disclaimer:  I am not a medical professional.  Do not make medical decisions based on information in this post.  Contact your doctor or call 911 in an emergency.