Food Allergy Mom

One of the first steps after your child’s initial allergic reaction to food is to meet with the allergist. If you’re like me, you probably have lots of mixed feelings about this appointment. Hungry for the information. Scared at what they will tell you. Wondering what you should even ask. Overwhelmed. Emotional. All of it.

I hope to encourage you in this article with a little insight in what to expect, questions to ask, and how to prep beforehand.

In a short time, our little family experienced several “first” allergy appointments. Our very first was when my son was 9 months old. This was 6 weeks after his reaction to peanuts. We took our daughter after her first reaction at 6 months old.

Additionally, we have also lived in 3 different states and have had to go through the process of finding and meeting new allergists.

Both of my kids also had subsequent reactions to new foods and we had allergy appointments in response to those reactions as well. I can only share with you my experience, but I hope to give you a better picture of what to expect.

I will also include my list of questions that I brought with me to the appointment that I hope you find to be helpful.

What to Expect

At our very first appointment with the allergist, I remember carrying my sweet, 9 month old baby boy into the allergy clinic. I was so unsure what to expect. My stomach was in knots. At this point, we (my husband and I) had been prescribed Epi-Pens for our son by the pediatrician and we were told to avoid giving him any peanuts.

We had waited 6 long weeks for this appointment. I was so nervous that I was physically a little shaky and I had a zillion things running through my mind. I had heard about skin testing from other moms. Would it hurt my son? What about blood work? Would they do this here? 

When we walked in, the experience was similar to our experiences at the pediatrician’s clinic. We checked in with the receptionist at the lobby desk, filled out the usual clipboard of paperwork, and waited to be called back.

Once called back, we were taken to our own patient room. When my kids were a little older, they took height and weight before bringing us to our room.

My advice:
Be ready to explain, to the best of your ability, exactly what occurred with your son or daughter’s allergic reaction. Whatever information you can give the allergist about what happened before, during, and after the reaction will be helpful.

You probably already know it by heart, but I would encourage you to write it down, make a note in your phone, or whatever you need.

Here are some things to think about ahead of time:

• What was the food that triggered the reaction? If the food contained multiple ingredients, have you kept a food journal that would help you narrow it down? You can also take pictures of ingredient labels to bring to the allergist.

• Had the child eaten that food before? If so, how many times?

• How long ago was the reaction? Has anything occurred since?

• What happened during the reaction? How long after eating the food did it take before you observed symptoms? What were the symptoms? Hives? Redness on skin? Vomiting? Diarreha? Difficulty breathing? Sneezing? Coughing? Any other physical symptoms?

• How did the reaction resolve? Was Benadryl or another antihistamine given? Epinephrine? Were emergency services needed? Did it resolve on its own? How long did it take to resolve?

• Do you have any pictures from the reaction to show what was happening on the skin, face, etc.?
  
• Is there anything else you feel the allergist should know about what happened?

In our case, at our first appointment, the allergist had us answer a long series of health questions to give a whole review of our son’s health history in addition to the specifics of the allergic reaction. Questions about the pregnancy, birth, breastfeeding or formula, skin issues (like eczema), any other health issues, etc. were all asked.

The allergist even had a specific person there to take notes for my son’s medical records! It was very detailed, which made my Type A Mom heart feel better and gave me more confidence in this process.

The Testing

Once you have gone through the questions the allergist has for you, they often will recommend allergy testing. This is done via skin testing or blood work. Sometimes they recommend just one of the tests, other times they will want both. I have had appointments where they just wanted skin testing that day, or just blood work in the future, or they called for both.

In my experience, I have never had blood work done at the allergy clinic. This has always been done at an outpatient lab. If this is the case for you, I HIGHLY recommend you go to a location that specializes in pediatrics if you can.

We’ve done bloodwork at both types of places. We had a much better experience at the outpatient lab for the children’s hospital than we did at a regular lab that services adults. Your allergist will likely have a referral they will recommend for you, and often if there is not a specialized pediatric lab nearby, they have a lab that the can recommend for kids.

I have found that the pediatric-focused places are, understandably, more equipped and prepared to help kids through this. I’m happy to share more with you about our experience with blood work in the upcoming post, So My Child’s Allergist Wants Bloodwork.

What Happens During Skin Testing

Every time the allergist called for skin testing on my kids, it was done right there in the allergy clinic. They administered the skin testing on the back. However, I have heard from some moms that it was done on their child’s arms.

Naturally, I was really worried about the “poke” on the back from the testing. I thought it would hurt my 9 month old baby. Surprisingly, my son didn’t even notice! I was so surprised. This has held true for all of the times my kids have needed skin testing! Neither of my kids responded when they administered the skin testing; they just did not feel the “poke.”

It was a completely different experience from when they have had shots administered at the pediatrician’s office. I would say the word “poke” is even too strong a word to describe skin testing. It’s more like a quick irritation of the skin epidermis.

The test panel will have a control and a histamine in addition to the allergens they are testing for. To be honest, what actually bothered my kids was not the poke, but the fact that the test gets itchy. This is a result of the histamine and if the child responded to any allergens.

Then The Test Gets Itchy

Positive results and the control histamine create a wheal (a red circle), which itches! Without a doubt, the hardest part of the whole test is that you have to keep them from itching it for a full 15 minutes before they will wipe it off.

This was much easier when my kids were babies (9 months and 6 months respectively). We walked them around, sang songs, and distracted them with toys while we kept them from itching their backs.

However, it was a completely different story when we had to do skin testing when my son was 3 and a strong, determined toddler. Keeping him from itching was much more difficult. My husband and I had one of us hold him and the other had Daniel Tiger downloaded and ready to go!

Unfortunately, my son still managed to get his hand on the histamine on his back and smeared it onto the lower part of his back, resulting in more hives. Not fun, but we got through it. You will too.

If you have an older child, I’m all for their favorite TV show, book, audiobook, toy, or whatever you know will help distract them for the duration of the test.

FARE is the trusted source of information on food allergies and they have a great article that explains a little more detail about skin testing.

Blood Testing

We did not have any of our bloodwork done during the allergy appointments themselves. Unlike the skin testing, we were referred to an outpatient center each time blood testing was needed.

Again, if you can, I highly recommend finding a location for the bloodwork that either specializes in pediatrics or works more with children. We have gone to both and we greatly preferred the experience that was more pediatric-focused.

If you would like to know more about blood testing, FARE is the trusted source of information about food allergies and they have a helpful article.

The Results

The skin test results are taken by the allergist during the appointment. For us, this has always been 15 minutes after they begin the test. The bloodwork usually took between 2-5 days to get the results back because they process those results in the lab.

Although the testing is not fun, it can be very helpful for figuring out the next steps.

You may hear some confusing information about test results. Like all medical tests, allergy testing has limitations.

Accuracy

Typically, most allergy parents are told that 50-60% of blood and skin tests can result in false positives. This means that the test indicates a positive for an allergen when the person can actually tolerate the food. FARE is the trusted source of information about food allergies and explains more about false positives in this article.

Ability to Predict Severity

Another limitation of the blood and skin testing is the ability to predict the severity of the allergy. For example, higher IgE levels on a blood test are not a guarantee of a more severe reaction like anaphylaxis.

Despite Limitations, Tests Are Still Very Useful

Testing is one of the data points that an allergist can use to make the appropriate recommendations for your child.

For instance, the test results in combination with reaction history and a child’s medical profile can give an allergist a clearer picture of what is going on with your child and what your child needs moving forward.

There is a lot that goes into whether or not your allergist will recommend that you have your child avoid a food or not. They may want tests prior to different food introductions. There could be different foods they prioritize for introduction, etc.

This will not look the same for every food allergic child because each child has unique needs and a different profile.

So although you will see people in these groups sharing lots of advice, articles, etc., do your own research, work closely with your allergist, ask lots of questions, and don’t underestimate the power of your own momma instincts.

Write Your Questions Down Ahead Of Time

One more thing, you are going to get A LOT of information at the first appointment. Bring your questions. I highly recommend having your questions written out on your phone.

You think you will remember them, but when you actually get in there with the allergist, it’s a lot to take in, and chances are you’ll forget. You’ve probably waited a long time for this appointment. Help yourself out and write your questions in a note on your phone. Your brain will thank you.

Here is a list of 10 questions to ask the allergist that I found really helpful for our first few allergy appointments.  

1. Can you explain the purpose and process of skin & blood testing for allergies? What do these tests indicate and what do the results mean for my child?

2. What do we need to know about Epi-Pen management?

3. What is the emergency care plan for our child? What else should we know?

4. Should we test for other potential allergies?

5. How should we handle new foods going forward? (For those of you with infants who are doing solid food introduction, are there foods the allergist wants you to prioritize? Avoid? Anything specific for your child’s needs or age in regards to new foods?)

6. Can you talk about label reading and food cross-contact? What do we need to know for our child? Is cross-contact a concern for our child?

7. Social Settings: What if we are around other people or children who either ate or are eating his allergens? How do we manage this? Is there anything we should know?

8. Should we remove the allergen from our home? For those of you that are nursing, should I eliminate the allergen from my diet?

9. We’ve read that kids have a chance of outgrowing this. Going forward, are there things we can do to help or future treatment options?

10. What is the plan going forward from this appointment? Next steps, future appointments, etc.

You may have your own questions that are unique to your child’s circumstances. Add them! Don’t worry about asking too many questions.

Leave with Clarity on Next Steps

This is one thing that is crucial. Make sure you leave the appointment feeling CLEAR on what the next steps entail. Are there follow up appointments needed? Are you introducing any foods at home? What foods do you need to avoid at this time? When are you coming back? Do you understand your emergency action plan?  

I usually had a mix of emotions after the appointments. The information was empowering. It made me feel like we could manage it, or make things as normal as possible for my child. And at the same time, it was often overwhelming and emotional.

Speaking with the allergist, reviewing test results, talking about next steps, it all made the seriousness of what my kids were facing that much more real.

In my heart of hearts, I hate this for them. I want them to eat food freely and not have this burden. The challenges that food allergies bring to them scare me. I wish it was me instead.

You Will Figure This Out

Although there are challenges, you will figure it out. You will pave a path to a new normal. My kids are living their best lives! They love food, they are social, and we go out to explore.

I won’t minimize it, there are some very tough moments. I have cried the tears, felt the panic, experienced the loneliness. But I promise you this, you will find foods your family can eat, you will find places you love to go to, and you will find people who are supportive.

You will figure this out. You can do this.

Sending hugs before your first allergy appointment.

Lauren

What to Read Next: Top 8 Resources for New Food Allergy Moms