Find Your People.
Katie and I say this all the time. Even if it takes awhile, find those people who will encourage you in your journey with food allergies.
Part of this support system will be a stellar allergist. Not a mediocre allergist.
A STELLAR allergist.
In my son’s young life of 5 years, we have lived in 3 states. As a result, my family has needed to find 3 different allergists.
Katie has also had 2 allergists. We compared notes and found a series of traits that have separated the good allergists from the great allergists.
1. Pediatric Background or Focus Area
When at all possible, I highly recommend a pediatric allergist or an allergist who has a background in pediatrics. Our current allergist sees both adults and children but has a medical specialization in pediatrics.
Honestly, it makes a HUGE difference.
Everything from bedside manner, the specific needs of children and the medical knowledge of allergies in young children, to whether or not the clinic itself is child-friendly, are all impacted.
It has been incredibly helpful to have allergists who understand issues like allergies in infants, breastfeeding, age-appropriate recommendations for care, school, and child development.
If you can, finding an allergist who really understands allergies in children is really important.
I first want to clarify that when I talk about accessibility, I am talking about accessibility once you are an established patient.
Here’s the thing, wait times when you are a NEW patient can be incredibly long. All 3 of our allergists have had at least a few months waitlist before we got in for our initial appointment.
The only exception was we were bumped up on the list because both of our children were infants (8months old and 6 months old respectively) when they reacted to their first foods and the doctors were concerned about continued food introduction based on a few factors.
My son was able to be seen 6 weeks after his first reaction. My daughter was seen a month after simply because my son and our family were already established patients.
Wait times when you are a new family can actually signal that this is a desirable allergist!
Once you are an established patient though, what does accessibility look like?
Are you able to get a hold of them easily? Do they answer the phone?
For example, I have had two separate incidents where my kids were having an allergic reaction and I was able to quickly get on the phone with the nurse at the allergy clinic.
Both of these allergic reactions did not have symptoms that warranted administering epinephrine per the FARE Emergency Care Plan.
I was able to call and get counsel on the response.
It’s so important to follow your emergency care plan, administer epinephrine and call 9-1-1 immediately when needed.
Can you ask a question and get a quick response? For example, I had a quick question that came up when I was planning a trip to Disney. I put a call in to the allergist and had a response the same day.
If you discover a new allergy, can they get you in for testing within a few weeks? (it can’t be immediately after an allergic reaction because that impacts the test).
Our ability to quickly connect with our allergist, schedule appointments when we need to, and ask questions has been very important.
3. Freaky Smart
One day I had made cookies for my son. He was 1 year old at the time and we had just gone apple picking. I wanted to try making this apple cookie recipe I had seen online.
It called for grated apple peel.
Something in my mom gut went off right before I handed my son the cookie. Instinctively, I only let him have a couple bites instead of having the whole cookie.
Sure enough, he began to react within a couple minutes of eating a bite of the cookie.
Luckily the reaction did not progress to anaphylaxis and it resolved on it’s own. However, I was shaken. I had made everything from scratch. All of the ingredients he had eaten before.
What could this possibly be?
At the time, we were managing peanut, tree nut, and dairy allergies. When we were sitting in our allergist’s office to discuss this latest reaction, I explained what happend.
“It’s the fresh apple peel,” she said.
My first thought was, “Uh, what?” After all, my son ate applesauce all the time.
She proceeded to explain the connection between a specific protein, which I have since forgotten but she knew the exact name of it, and his tree nut allergies. The protein is only present in the apple skin, not the flesh of the apple, which is why I had never run into it before because I always peeled the apples. She also knew which apples had higher concentrations of it in the apple skin.
I was stunned.
But also incredibly impressed at the knowledge this allergist had. And to be honest, it was comforting. So much of the time I feel like I am the one in the room most equipped to handle my children’s food allergies. It is a huge responsibility.
And although I am so happy to be there in that way for my children, to feel like you’re the expert all the time, that in an emergency everyone will look to you to lead, it can get exhausting.
I felt a deep sense of comfort that I was sitting with an adult who truly had more knowledge on this than I did.
Find the allergist who is freaky smart. Who can name random specific proteins and help you connect the dots.
4. Includes the Whole Medical Profile of Your Child
Our family moved out-of-state when my son was just 1 year old. I remember our very first appointment with our new allergist.
One of the first things that this allergist did which to this day I really have appreciated, was invest time in understanding the full medical history of my children.
She asked a laundry-list of questions. Everything from details of the pregnancy, birth, vaccinations, family history, breastfeeding or formula feeding, any skin issues, developmental milestones, everything. This took at least a half hour.
She asked for the records from the previous allergist and pediatrician.
This allergist wanted the entire picture.
I have noticed the same with the allergist we have now. They have been very willing to share records and receive records from previous allergists and pediatricians.
And I believe this is critical because children do not have food allergies in isolation. Food allergies are one aspect of their medical make-up. One aspect of the whole picture.
Understanding this can help provide the best care.
For example, my daughter, and Katie’s daughter as well, has a skin condition called Dermatographia which basically means her skin gets red very easily. A small scratch can create a raised welt and she can also get hives easily.
This is helpful to understand as skin redness and hives are both signs of a food allergy. It’s important (and highly stressful) for me to be able to differentiate between the cause of her symptoms (food allergy or Dermatographia).
A complete medical profile of your child can help your allergist provide the most informed recommendations, which ultimately leads to the most informed care for your child.
5. Balances Clinical with Daily Living
This was a trait that I hadn’t considered until we were farther along in our food allergy journey.
As a new food allergy mom, I was trying to learn everything that I possibly could (I still am). So when I was presented with raw data, that was king. I didn’t consider the impact of daily living.
For example, the raw or clinical data from the LEAP study showed that early introduction of peanut can reduce the risk of developing that food allergy in some children that are higher risk.
The data from the EAT study showed that early introduction of food allergens did protect some higher risk children from developing food allergies.
My daughter is not high risk for developing food allergies but she does have a slightly elevated risk of developing food allergies because her older brother was diagnosed with peanut, tree nut, and dairy allergies. This data from Science News explains this more and can be found here.
Two Different Approaches
We have had two allergists give us two completely different approaches. The first was data heavy. This allergist used these two studies to emphasize that introducing my daughter to peanut early would be very important and that we needed to keep it in her diet 3 times a week.
The problem was, this same allergist had advised us not to keep peanut products in the home because of the high risk for anaphylaxis that my son has in addition to the fact that he gets hives on contact with peanut product.
The solution was to feed our daughter the peanut product outside the house (on the porch or in the garage).
This resulted in a 3 times a week ritual where my husband took my son to a different part of the house to play. I then took my daughter, fed her the peanut product, showered both of us off, changed clothes, fed her to help clean her mouth, and kept her and my son separate so she wouldn’t drool everywhere.
Three. Times. A Week.
This was a highly stressful experience that bordered very closely on absolutely ridiculous. But we were so determined to do anything to prevent my daughter from developing a peanut allergy.
The Second Approach
We met with another allergist and shared about this previous advice and protocol. His approach was different and emphasized the practical living aspect.
He was very familiar with the clinical data and knew about the various studies.
However his point was that practical living was being neglected and pointed out that this was creating extreme stress in the home. When questioned about the data, his response was that although the clinical studies have pointed to a reduction, they are not a guarantee of preventing the allergy.
Ironically, my daughter reacted to bananas, not peanut.
His perspective was that this scenario was causing extreme stress, while also creating a possible risk to my son and actually advised that we not do this.
Two very different approaches.
This is NOT about which allergist was right and which one was wrong. They are actually both right.
Anything medical is a risk analysis. What does the data suggest? What does the practical day-to-day look like. Are there pros and cons? Does either approach cause benefit or harm? Do any of the pros outweigh the cons?
What’s critical is to find the right balance and right risk assessment for your family’s specific needs!
This is part of why Katie and I will continue to emphasize that different food allergy families will do things differently, and this is OK!
6. Cares About the Child’s Experience
One of the biggest things I have noticed about the allergist my children currently have now, is how he is aware of and cares for what THEIR experience is.
And actually takes it into consideration when he makes recommendations.
For example, my son has had two blood draws so far for food allergy testing. In short, they were both awful and really tough for my son.
In both scenarios, a lot of blood was needed and the vein was missed both times. We open up about this and ideas for making this appointment easier in our post, So Your Child’s Allergist Wants Bloodwork.
We shared with our allergist about this and he was visibly upset that my son had had such a hard time. The plan has been for my son to have annual allergy testing for his food allergies, both skin and blood testing.
His response was that for next summer, he wanted my son to just come to the office. No bloodwork. And that he would give him an extra 6 month break and test again at 18 months.
Creating a Positive Experience
His thought process was based on my son’s current numbers, he is not concerned about a significant change in what we will see at 12 months vs 18 months at this point and that my son’s experience is also important.
He said that the purpose of having my son come to the office next summer would be to have him come have a positive experience at the allergy clinic. Do a check in with him, confirm the game plan for the following year, and give my son a sticker and a high five.
I could have burst into tears right there.
It meant so much that this allergist really cared that my son not be scared of coming to the allergy clinic, especially because the reality is he will likely need to go annually for a long time.
An allergist who really cares for and considers what the child is experiencing is pure gold.
7. Take Food Challenges Seriously
Here’s the thing, I admittedly asked like a zillion questions before my son’s food challenge. And it wasn’t until I saw how confidently the allergist responded to my questions that I was comfortable with this whole concept.
Sadly, I have heard from other food allergy mommas that the allergist continued food challenges even when symptoms began appearing, dismissed the parent’s concerns, did not take a child’s development or special needs into consideration, etc.
Both allergists where we have had the opportunity for a food challenge have had age restrictions and/or child development milestones. They have required specific results for both skin AND blood testing. And they have carefully considered my questions.
In short, I felt very safe bringing my son to a food challenge.
If your mom gut is going off that something isn’t right, trust it!
For more on food challenges and the questions that I asked beforehand, check out our blog post “What To Expect at a Food Challenge.”
8. Truly Listens to You
Finding an allergist that you truly connect with is key. You should leave an allergy appointment feeling like your questions were answered and you understand next steps.
I’ve heard from too many food allergy moms that they felt rushed at the appointment, didn’t get their questions answered, left without an emergency care plan, and/or that the allergist had a difficult bedside manner.
This includes Katie. Although she would tell you that her previous allergist was knowledgable, she felt rushed and actually like she was burdening the allergist with her questions.
Katie even had an allergist’s nurse practitioner tell her to “take a chill pill” when she called with a concern.
Not going to work.
And let’s just say that Katie is with a different allergist now.
First of all, you’ve probably waited weeks, if not months, for this appointment.
Second of all, food allergies are a journey and a life-changing diagnosis. This is a potentially long-haul type situation.
Third of all, this is your baby. Any allergist who is going to really care for and connect with you is going to understand the fear, anxiety, and stress of managing life with food allergies for your child.
I look at finding an allergist as finding the medical expert team member of your food allergy support system. Your team needs the person who actually has the clinical and medical knowledge.
You need a good team, Momma. This is too hard.
You’ll know you’ve connected with a great allergist when you really felt heard and validated in your appointment.
How to Find Them
So how do we find these people.
I’ve had to do this 3 times. First, your pediatrician often has great referrals and this can be a great starting point.
If you are looking for a new allergist and are staying in town, put a note out into your network. Ask around work, friends, church, moms groups, sports, etc., and see if anyone has personal experience.
You can also join a local moms group on Facebook and ask for recommendations. This can be especially useful if you are relocating, like I was, and didn’t know anyone in town. This is actually how I found our current allergist. I got the names from a local Facebook group, used that as a starting point, and then did my own research.
I also want to say, I know that changing allergists has a cost. Insurance can be both great and awful. Do your best to vet the allergist before you get in there.
But sometimes, it just isn’t right. It is not a fit. And that’s not your fault. If that’s the case, when it is possible (both financially and logistically), I want to encourage you to find an allergist who is a really great help to your family. Having a great allergist can really lift some of the burden of life with food allergies.
They are out there!
As always, Katie and I are here, in your corner, cheering you on.