When a Food Challenge is Unsuccessful

Facebooktwittergoogle_plusredditpinterestlinkedinmail

Superman has had 8 food challenges, and 6 of them have been SUCCESSFUL.  He’s passed, soy, oat, cherry, strawberry, almond, and mixed tree nut.  The two that have been UNsuccessful have been baked egg.  You can read HERE about his first baked egg challenge when he had an anaphylactic reaction. Ironically, this time around it was almost an exact replay of his first baked egg challenge.  The one exception, is that it happened so much faster this time.

When a Food Challenge is Unsuccessful~Mom Vs. Food Allergy

 

At 9:20 I took a picture of Superman and I after his first “dose”, 1/4 of a cookie.

When a Food Challenge is Unsuccessful~Mom Vs. Food Allergy

Right after his first bite of baked egg cookie.

At 9:52 I took a picture of him right after he had his shot of epinephrine.

What happened in just 30 minutes, was something I want you to learn from, so you can see the progression of an anaphylactic reaction.

Superman first ate 1/4 of the chocolate chip cookie.

About 5 minutes later he got really sleepy.  I didn’t think much of it at first (except a flashback to his first baked egg challenge), because he had trouble falling asleep the night before due to being excited and a bit nervous.

He started rubbing his eyes here and there.

He complained that his stomach was hurting, and thought he might have to go to the bathroom.  My husband took him to the bathroom, since he hadn’t had a bowel movement in a couple of days (sorry, TMI….but part of this equation), but he didn’t have a bowel movement.

It was time for his  vitals check (every 15 minutes during food challenges) from the nurse and the doctor.  We alerted them to his sleepiness and the doctor said his heart rate was normal.  Normally, our allergist said, heart rate would rise in the effect of lethargy from an anaphylactic reaction.  Because of the stomach pain, sleepiness, and rubbing of the eyes we decided to wait an extra 15 minutes before we gave him the next “dose” of cookie, which would have been 1/4 of a cookie.

Superman went back to watching his movie, while we waited to see if he could have the next portion of cookie.

About 6-10 minutes later he was complaining of even more stomach pain.  We convinced him to try the bathroom again, still truly thinking it could either be hunger (food challenges are done on an empty stomach, so he’d had no breakfast) or a bit of constipation.

As he stood up to go to the bathroom, his face got pale and he said something to the effect of, “I don’t feel good” and “I need water”.  I got up to get the nurse or doctor, and as I walked out the door I could hear him vomiting behind me.

At that point the doctor was walking in and it was no question that he was experiencing an anaphylactic reaction as he vomited a second time.  Epinephrine was given immediately and the reaction stopped in its tracks.  I’m going to say that again.  The REACTION STOPPED IN ITS TRACKS.  I’m repeating that to remind you of the life-saving power of epinephrine and why you should carry TWO auto-injectors with you at all times.  (I’m pretty passionate about spreading that news.  Epinephrine has saved my child’s life 3 times now, and I’ll sing it’s praises until there’s a cure for food allergies.)

When a Food Challenge is Unsuccessful~Mom Vs. Food Allergy

After his shot of epinephrine, and asking for a band-aid.

Why did we go ahead with this food challenge?

Our allergist, my husband, and I, felt he was really ready.  His most recent blood test results were very low.  Despite a small positive reaction on a skin test last year, everything still showed a green light for a BAKED egg challenge.  According to this article on American Academy of Allergy Asthma and Immunology (AAAAI), those that can tolerate baked egg are more likely to outgrow their egg allergy and then tolerate regular egg.

His component testing results were:

Egg White specific IgE 0.75.
Ovalbumin is 0.89, and ovomucoid is 0.35.

Ovalbumin is the main protein found in egg white, making up 60-65% of the total protein.
Ovomucoid is a trypsin inhibitor found in raw egg white.

I found this article interesting as I was researching ovomucoid.

Do I regret doing the food challenge?

No.  I can’t beat myself up over something that I made an educated decision on.  I never would have agreed to it if there was any doubt in my mind.  Our allergist was completely surprised that he didn’t pass, and I know he wouldn’t have suggested the challenge if he doubted that it would be successful.  What I learned from this experience is that LETHARGY is his first symptom to an anaphylactic reaction upon ingesting baked egg.  We are to use his auto-injector upon known ingestion of an allergen, or suspected ingestion with the symptom of lethargy.

What’s the takeaway?

Food allergies are unpredictable.  Food allergies are different for everyone, including the type of reaction, and not excluding a person’s tolerance for an allergen.  What I DON’T want you to do is compare your child’s blood test results to my child’s and make a prediction, or base decisions off of our experience.  What I DO want you to do, is talk your board certified allergist about future food challenges and make a plan based on your set of allergies and testing results.

P.S. **Never do a food challenge at home.

The good thing is that he was able to still enjoy a birthday party that afternoon with friends at the local splash park.  He took it easy while I watched him like a hawk for a biphasic reaction.

When a Food Challenge is Unsuccessful~Mom Vs. Food Allergy

Having fun at the splash park!

**Disclaimer:  I am not a medical professional or doctor and this website is not intended for medical advice.  Please consult your board certified allergist for medical advice.  Do not attempt food challenges at home.  In an emergency, call 911.

Has your child had a an unsuccessful food challenge?  What did you learn from it?  Please comment below and share your thoughts!

Facebooktwittergoogle_plusredditpinterestlinkedinmail

Goodbye Daily Asthma Inhaler

Facebooktwittergoogle_plusredditpinterestlinkedinmail

I never thought I’d type the title to this post, but I’m so happy to be doing so.  It’s been a long haul the past 26 months, and I had gotten really weary the past 12 months.  You see, it was 26 months ago that Superman was finally diagnosed with asthma, and 12 months ago that I realized he had basically stopped growing.

GoodBye Asthma Inhaler~Mom Vs. Food Allergy

As a first-time parent, I was clueless about asthma, and thought he was just suffering from a really bad respiratory virus the first time we had to take him to the ER.  Once admitted the nurses kept saying “asthma” and “asthma action plan”, but no doctor ever said “Your child has asthma”.  Needless to say, I was confused and thought the nurses were overreacting.  He was, of course, given nebulizer treatments, prednisone, and a prescription for Albuterol, the asthma rescue inhaler.  Even after a follow-up with his pediatrician, she didn’t diagnose him with asthma.

My dad and I rushed Superman to the hospital late one night, for the 4th time.  He just couldn’t catch his breath at all, and it was getting extremely scary.  Superman was coughing so hard, and out of breath that I couldn’t wait on the respiratory team to get there to begin his treatment….so I did it myself.  Later that night he was admitted for the night and was able to go home the next evening.

Finally, (and not because I wanted it),  the other foot fell, and I heard the words “Your child has asthma”.  In some ways it was a relief, because I was ready for these late night ER runs to come to an end.  It was then, while in the hospital and after diagnosis, that he was prescribed Flovent and given an Asthma Action Plan.

Since that hospitalization, we’ve not been back to the ER for asthma!  That’s great, especially since it’s been over 2 years since he started the Flovent. But….

about a year ago I realized that he wasn’t growing.  At 5 1/2 years old, he was only 40 inches and a mere 30 lbs.  He was cranky, tired, became a picky eater and had no appetite.  He was irritable, had trouble falling asleep, and had no energy.  My biggest concern was that he hadn’t grown taller or gained weight in awhile.  I brought it to the attention of our pediatrician at his 5 year well child check, but she wasn’t concerned and attributed his slow growth to his limited diet.  I was still concerned, and after a comment from our allergist, I was even more concerned.  I simply asked our allergist, “If he were your child, would you be worried and take him to the pediatrician? “.  The next day I made an appointment with our pediatrician (a new one), and thus began many months of doctors appointments and tests to see what was going on.

Most of his blood tests came back normal, except for an elevated bilirubin and one marker for Celiacs Disease.  However, at age 5 years and 3 months, his bone age X-ray came back to reveal his bones were the size of a 4 year old.  No surprise there, and at this point (October 2014), strangers were asking if he and my 2 1/2 year old daughter were twins.

In April 2015, he started getting small dots around his eyes.  They never itched, but kinda looked like small pimples.   In late March, I talked to our allergist about an unrelated topic, but when asked how Superman was doing and I explained the “rash”,  he recommended a Neosporin for eczema.  The cream didn’t work and the “rash” continued to get worse and spread.

Fast forward two weeks, just two days before our routine allergy appointment, and the rash was now on his cheeks and wrapped around his chin.  It was red, puffy, and inflamed.  Our allergist prescribed an antibiotic for Impetigo and sent us on our way.

Goodbye Asthma Inhaler~Mom Vs. Food Allergy

Superman has been a bit self-conscious about is “bumps”. Because the internet isn’t a safe or honest place, I am protecting/respecting his identity in these picture where he has his “bumps”, so that’s why I’ve given him Superman eyes.

After two weeks it didn’t work and he referred us to a dermatologist.  Another round of antibiotics and an anti-inflammatory cream later (Eledel), the rash was still there.  So, on to a different cream (an antibiotic cream used for acne patients) and it still didn’t work after two more weeks.  Dermatology was stumped, but came to the conclusion that he had steroid induced acne.  It’s rare, especially in a 5-year old, but coupled with his growth delays there was really no other explanation.  Back to the allergist we went to discuss a steroid free medication for managing his asthma.

Superman is now on Singulair, a 5 mg chewable, and over the past two weeks we weaned him off of his QVar (we had switched from Flovent a few months ago, hoping it would fix the growth delays).  He still has his Albuterol rescue inhaler to use  when we need it.

Let me tell you the changes I’ve seen as Superman has weaned off of his inhaled steroids….

-increased appetite

-his acne is healing

-more energy

-less cranky

-falls asleep easily

-no headaches

-he already looks taller

The biggest change for me that I notice, is that I see him SMILE and he seems HAPPY, for the first time in a LONG time.  He isn’t an irritable boy that feels yucky anymore.  I really feel like inhaled steroids stole my son from me the last two years.  He had become very hard to parent, as he was just never happy or pleased about anything.  I truly believe the steroids have slowed/stopped his growth and were almost to the point of poisoning him, and the acne was the result of the dangerous levels of steroids in his little body (I’m assuming they can build up in some sort of way).  

The exciting, positive part?  The fact that after 10+ doctors appointments (yes, at least 10 trips to the pediatrician, GI, endocrinologist, dietician, and allergist) between October of 2014 and May 2015, we may have finally found the cause of Superman’s delayed growth and acne.  I am beyond ecstatic and can’t wait to see how Superman continues to improve and grow!

If you are having similar reactions in your child who is taking a daily inhaled corticosteroid (ICS), talk to your doctor.  Because acne and growth delays are a rare side effect, it took a long while to convince any of the doctors that it was the ICS causing the “rash” and growth delays.  For us, it got to the point where there was no other explanation, and I’m praying that Superman’s health starts to turn around.

 **I am not a doctor and this post is not intended to be medical advice.  I am a mom with a child with life-threatening food allergies, environmental allergies,  and asthma, and I am simply sharing our experience in hopes to help someone else going through a similar situation.  Please consult with your board certified allergist or pediatrician for your medical needs or before stopping/starting any medications.  I do not recommend stopping inhaled asthma medications without a thorough consult with your doctor.  Asthma is a serious condition, and can cause death if not well-managed.  Those with life-threatening food allergies and asthma need to give extra care to their asthma management.

 

Facebooktwittergoogle_plusredditpinterestlinkedinmail