A little over a week ago Shaun had his summer visit to his allergist. At this point, we typically check-in 4 times a year (not including food challenges or sick visits) with the intention of looking at his allergies, asthma and eczema condition. This allows us to make any changes to his care plan that are needed and keep him up to date with challenges and therapies that would open up Shaun’s diet.
I spent the afternoon before his appointment gathering my thoughts, paperwork, and questions. I am aware that this preparation** takes extra time, time that we could use for 1,000 other things we need to be doing. (I left our family cottage early to come home and make sure things were in order for our time with Dr. H) But experience is an excellent teacher, and I know how critical it is to show up prepared for these appointments!
** Prep work is a theme of allergy life! Food prep, planning meals and grocery shopping, extra vacation prep, food product research, prep a separate lunch for a family outing, prep for the beach or the baseball game … I could go on. Prep work is another insurance policy, paid for with upfront time, that makes allergy life manageable and ultimately safer!
At the beginning of the appointment, a medical assistant always takes Shaun’s height and weight. And I am excited to announce that Shaun officially weighs 30lbs!!! I know, 30 lbs, it seems silly but for half of his little life, we have spent countless hours focusing and stressing over his growth. He was born small but shortly after his eczema started we began to notice he had fallen off his growth curve. Shaun’s pediatrician and allergist referred us to the pediatric GI & nutrition practice leading us on a 3-year journey that I will share with you another time. But I tell you all this because 30lbs is a big win for us, in fact, we might even throw a party!
With the appointment off to a great start, we dove into the state of Shaun’s asthma and eczema. Dr. H was happy to see and hear that it’s well managed currently and recommend that we just continue our current care plan. I’m not going to lie, it took a long time to get to a place where the care plan didn’t change with every doctor visit but here we are, no changes to the care plan and it feels really good.
Next up, allergies! Dr. H suggests we use the appointment to look at Shaun’s environmental allergies. It had been a while and given his struggle this past spring she wanted to have more recent data in his chart. So we agreed to do an environmental skin panel and would test his food allergies by blood work (adding his food allergies to the skin panel would have been a lot given the environmental panel required 24 skin pricks).
This was the part of the appointment I was grateful to have John with me! Shaun is now old enough to know what was about to happen and he got incredibly upset. I held Shaun until they were ready to apply the skin test. Then I was able to pass him to John who could hold him tightly enough to give the staff a chance to administer the test.
Is it hard to watch your child freak out and scream and squirm because they are upset by the skin test?
Yes, it is horribly hard and frankly heartbreaking.
But I am an adult. And I know that this test, although momentarily uncomfortable and upsetting (for him and me), will yield valuable information. Information that will help us as we continue to expand his world!
So despite the screams forcing their way out of his little body, we move forward with the test. It is important.
Once the test has been administered to his skin we do our best to comfort him as we wait the required 15 minutes for his body to react. A nigh-night (blankie/woobie/etc.), dum dum pop, a YouTube video about buoyancy and density (following up on some concepts we discussed while at the ocean) and he was calmer and we were ready for Dr. H to look at his skin.
We lifted his shirt and I laughed a little … because sometimes in life it’s laugh or cry.
An untrained eye could have looked at Shaun’s back and known that he is allergic to almost every environmental stimulus they tested him for.
And even though I anticipated this result before we arrived for the appointment, there is something that sinks inside you when you see it painted in bright red and white splotches on your child back.
Knowing this did give us the opportunity to discuss the possible benefits of allergy shots for Shaun and what that entails. So we will take the information given to us, by Dr. H, do more research and talk with Shaun about if this is something we want to start with him. This therapy is not comfortable short term (who wants to go get weekly shots?) but might provide him major relief long-term.
We wrapped up our appointment by verifying the prescription refills he needs, getting hard copies of the necessary school forms for September and leaving with a lab order for blood work.
Overall, it was a great appointment. We were able to cover everything we needed to discuss. We gathered updated information about Shaun’s current response to environmental allergies and we left with the forms and medications we need until we return in November.
I’m so grateful for Dr. H and the staff at CTA&A. I know Shaun has the best care! And as an allergy mom, I can’t ask for anything more.
To great doctors,
P.S. – (Is a ps a thing in a blog?) Shaun and I went this week to get his blood work done. The screams were worse than the skin test but we both survived. Nothing a game of mini-golf can’t fix! Results will be in soon, I will keep you posted!
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Until I had an allergy child, I didn’t realize the skill and planning required to have a successful and worthwhile visit to the doctor’s office. It takes time to learn the skills and understand what you need to plan before each appointment!
I know, it was a surprise to me too!
My health has always been good … no major, chronic issues that affect my day to day life. I am very grateful for my good health, but my experience of yearly well visits or sick trips to address an ear infection or the flu left me utterly unprepared. The experience of working with doctors to diagnose and control a chronic health issue requires more than just showing up.
Shaun, at about 3 months old, after 4 weeks of no improvement with angry eczema covering his skin (check it out here), was referred by our pediatrician to a pediatric dermatologist and then to an allergist. And at this point, I realized I was in over my head.
3 different doctors, in 3 various offices all trying to help my little child. And although I was grateful for the team of experts we were assembling, everything felt repetitive and disjointed.
I would show up to appointments with Shaun, ready for the doctor to come up with a plan to help us, but I was unprepared. I couldn’t remember (or pronounce) the name of the medications we were trying. I forgot what test the allergist recommended when I met with the dermatologist just a few short days later. I did my best but got distracted by my infant’s needs and, at times, fussiness causing me to miss important information. Each appointment I left with a new “plan of action” for Shaun’s care.
My head was spinning, and my heart was aching. I wanted my son to be healthy! I wanted to be able to help him.
I realized I needed a more practical approach. To better advocate for my son.
I needed to become a resource to the doctors providing them with the information, treatment plans, and tests the other doctors were trying.
Step 1; and I know this sounds silly, but this is experience talking, double check all your appointment information with the office staff!
Write everything down or get a print out with the appointment information. This will help you remember the details, and you can refer to it if there is a conflict when you arrive at the doctors’ office.
Keep a record of who gave you the information. Taking down the name of who you spoke with will help if you need to talk to them again to adjust or confirm something.
Because you will be working with the office staff a reasonable amount, especially in the beginning, it will also help you learn who is who. In some cases, all the office staff is excellent to work with, and this isn’t as necessary, but in other situations, you want to know who to ask for when you need to get something accomplished!
Verify all aspects of the appointment: date and time, the doctor you will see, the office location (many allergists are spread across multiple offices depending on the day of the week if they’re doing food challenges that day, etc.) and the nature of the appointment.
There is nothing more infuriating and devastating than showing up to your doctor’s office, carrying an infant with bleeding skin, in the dead of winter, desperate for help only to be told by the receptionist that you showed up on the wrong day! (At one office this happened to me several times)
In those moments, my tired, momma heart fell flat! However, learning to keep this information organized gave me an advantage and the confidence to speak up to the office staff and explain that I was in the right place at the right time and that someone would see Shaun before I left the office.
These days, now that we have a better handle on Shaun’s overall condition, I do not feel quite as desperate, but I still maintain this practice. Time is a valuable commodity that I never seem to have enough of and making this small investment to be sure to verify and keep a record of this information will only benefit me.
Step 2; show up to the appointment prepared.
Google Docs became my best friend! (not an ad, just really useful) I started keeping a record of all interactions concerning Shaun’s health condition and storing it on Google made it accessible on any computer or device. This made it easy to update several times a day if needed.
Although I kept everything digitally, I also kept a physical binder. The binder came with me EVERYWHERE because you never know when the doctor is going to return your phone call. I have pulled to the side of the road many times to answer a call from Shaun’s doctor and check the numbers on the blood work results in “the binder.”
Have your current care plan on hand!
I began to notice that at the beginning of each appointment, we would be asked the same questions. So I walked into the exam room with a printed copy of my Google document, and I would give it to the doctor or staff.
Some of the things I had included on the page were:
Name and date of birth
Current height and weight
All current medications (including strength, dose, and frequency)
Any other conditions that would need to be considered (in our case eczema and eventually asthma)
Often the doctor or staff would copy the form and put it in their file. This saved us precious minutes with the doctor.
Bring written questions. Yes, have them written down, as many as you can think of. Understanding food allergies is essential to staying safe. One of the best ways to learn is by asking questions. I promise if you don’t write them down before the appointment, you will forget them!
If the appointment is for a child, have books, toys and, if possible, a second adult. It can be hard to keep your child calm an occupied while trying to discuss and understand relevant information that is new to you. Having distractions and extra help will allow you to stay more engaged with the conversation.
Step 3; take notes and keep copies! Write important things down during the appointment and ask for copies of care plans and test results.
Any change(s) to the care plan
Answers to your questions
Prep requirements for future testing
Red flag symptoms and what response you should take
I took notes with a pen during the appointment and transferred it to my digital copy when I got home. (Not the most elegant, but it worked through the chaos)
Yes, all this took a tremendous amount of time!
But it helped to make the most of our time with Shaun’s doctors. We became efficient and effective! The doctors appreciated the preparation. And honestly, skills and planning allowed Shaun’s care team to get his eczema under control and food allergies diagnosed as quickly as possible.
I am grateful to have learned the benefits of this kind of preparation before a doctors appointment! It is an important life skill to have. And maybe some of my tricks will leave you a few steps ahead during your next doctor’s visit.
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Food challenges are part of allergy living, and like most things in allergy life, it is stressful, nuanced, and rewarding all at the same time! A food challenge is considered “the gold standard” test to determine if a person is allergic or not to a specific food.
3 years ago this month, Shaun (at 19mo old) had his first food challenge (Soy) that ended in success! We left the allergy office that day with the OKAY to add soy products to his diet. (If you live with strict avoidance of soy, you know how huge this win was for us! Soy is in a tremendous amount of food.)
Shaun has gone through 4 food challenges with a 75% success rate.
We have challenged:
Baked Cows Milk: Failed (a post all its own)
Each time Shaun passes a food challenge, our menu opens up, and we feel a little lighter!
So what is a food challenge?
A food challenge is when an allergic person under the supervision of their allergist, in a highly controlled environment, eats food they have previously been diagnosed as allergic to and are strictly avoiding.
Our allergist looks at IEG blood work results along with results from skin tests to determine if a food MIGHT be successfully added to a person’s diet if it is challenged. The recommendations an allergist make varies depending on patient history, age, ability to communicate, etc.
The entire food challenge process is very structured and highly monitored because although there is a chance that the outcome can be successful … there is also a chance that the challenge can end in hives, anaphylaxis, or anything in between.
For me, this was the part that elicited stress and strong emotions. How can I possibly bring Shaun into the doctor to feed him something that could send him into anaphylaxis? I had to rely on the controlled process and allow the reward of opening up his diet to outweigh the feelings of fear and the counter-intuitive nature of the food challenge.
Here is what we have learned to expect with a food challenge:
They take a long time to schedule.
If your allergist recommends that you schedule one of these tests sometimes, it can take 6 months or more (we have waited 8 months) before there is an available appointment. Because these challenges take a minimum of 5 hours, there is a limited number of available appointments per day. Be ready to take what you can get and rearrange other plans.
You can’t be sick.
Because food allergies are auto-immune based, it is essential that your immune system is not already taxed at the time of your food challenge. This means a cold, virus, or infection just before or at the time of your scheduled test will require you to reschedule.
3 of our 4 food challenges have needed to be rescheduled. Yes, it is beyond frustrating but also an important reality. First, because an already burdened immune system will increase the risk of a reaction occurring, and secondly because if you were to carry out the challenge in this state, you could fail the test only because your immune system is already working so hard; leaving you with inaccurate results.
Pass or fail it will be a long day in the office.
Because the doctors monitor you for any symptoms (from hives to anaphylaxis), you’ll be in the office for several hours. Plan to be out of work or school all day.
You will want to pack a few things to keep yourself busy!
With Shaun at such a young age, both John and I have always attended the food challenges together. This allows us to take turns distracting him in the small exam room and step out without leaving him alone if we need to use the bathroom or take a break.
We have read books, built puzzles, written postcards, played dinosaurs, colored, raced matchbox cars, and in really desperate moments watched movies. I try to pack one bag with varied activities that we can spend the day exploring. It is hard to be cooped up in a small room, but these activities help so much!
Also, it can be frigid in doctors offices, dressing in layers is crucial so you can add or remove layers as needed.
You most likely had a blood test, skin test or both to determine that you are in a position to schedule a food challenge, but the day you go in for the test they will repeat the skin test to verify that there have not been any changes that would increase the risk.
Skin test are, no doubt, unpleasant (we always have tears). Going through this just before the food challenge is another way the process is set up to lower the risk of anaphylaxis.
Signing the release form.
As with any medical procedure, the food challenge includes a release form explaining all the things that could go wrong as a result of ingesting the food you are about to test. It is always a scary moment acknowledging the risk involved. However, it’s important to remember that THIS is the safest way to carry out a food challenge to increase dietary options!
Do not try to do this at home, without proper medical supervision and emergency personnel ready to assist!
Dosing & Waiting
When you get the all clear to start the challenge, you will be given a precise dose of the food you are testing. Then you wait … 20 minutes … if you have no symptoms, a second dose (larger than the first) will be delivered.
This cycle will continue until you pass the test or have symptoms that end it.
Pass or fail; there is hope in this process! Hope that you may be able to open up your diet.
Work closely with your allergist, push through the fear. Food challenges have been life-changing for us, and they might be for you too!
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