I know it might seem like a silly question, but we have found that using a great pharmacy makes life easier.
With the chronic conditions, we manage we are at the pharmacy often.
At the moment, Shaun sees a pediatrician and three specialists. He is diagnosed with multiple food allergies, asthma, eczema, environmental allergies, and eosinophilic esophagitis. Each allergic condition requires treatment plans with several medications; Maintenance medications, medications for sick plans, and emergency medications are all needed to keep Shaun safe and healthy.
All these medications are why having a good relationship with your pharmacy matters.
Your pharmacy oversees ALL the medications from ALL the different doctors on your care team.
On the most basic level, your pharmacy should:
Make sure all prescribed medications will not cause drug interactions.
Verifying instructions and information about medication.
But 5 years ago, when we started this allergy journey, we learned that a pharmacy could be so much more than this!
Until that time, we sent prescriptions to whatever pharmacy was physically closest to home. I think most people take this approach and then make a change if they have a horrible experience.
In our case, we made a change because Shaun needed a special compounded antibiotic to take care of his severely infected eczema. After a lot of phone calls, we finally found one pharmacy that could fill it for us. It was about 25 minutes away from home and not central in any way to Shaun’s doctors. The plan was to fill this one antibiotic and go back to using the regular local pharmacy.
Yet, our experience with the pharmacy’s customer service changed everything!
I was tired, scared, and stressed. We were having trouble obtaining the medication my 6-month-old needed. (Medication that I was not thrilled to put Shaun on in the first place.)
The pharmacy staff was kind, offering to call the original pharmacy to get the prescription in an effort to fill it as soon as possible. We went later that day to pick it up, and they seemed to know who we were when we walked in the door. They got Shaun’s medications and talked to us about what to expect and let us know to call if we have any questions or concerns. Not to mention, the packaging of the medication allowed us to dose the medication into an infant syringe quickly.
Although these might seem like small gestures, they were not insignificant, especially as John and I struggled to get a grip on Shaun’s health! The small yet extra effort in service and product was enough for us to move all our prescriptions.
We still use this same pharmacy! We drive the extra distance because it is worth it.
Just recently, as John changed jobs, although we considered the change to our insurance, we didn’t think about if the change would affect the ability to use the pharmacy (First world problems I know, but we were distraught by the possibility.)
Here is why we love our pharmacy!
The staff knows who we are. On the phone or in person, they always have our information ready to go.
A person always answers the phone! No menu of choices or leaving a message on a machine to wait for a callback.
They are always well staffed. Well staffed, meaning enough people are working to meet the needs of the customers as well as staffed with people who are knowledgeable and helpful.
They work with us to make sure medications get proper labels for school. And in some cases, split the medication into two containers so we can have it at home and school.
They offer to do the leg work when they can. Call a doctor to ask about a generic? Find out about medical supplies that they would need to order? Getting a copay coupon card to reduce the cost of medication?
They set expectations and follow up. I have never had to call them because I didn’t hear back about a question or concern they were looking into.
If they can get us a better price, they will!
There are so many things that we are continually trying to manage with Shaun’s allergic conditions. Having a pharmacy that will go the extra mile to work with us is a huge blessing.
We often spend a lot of time making sure we are seeing the right doctor. Why don’t we consider if we are using the best pharmacy option, we have access to?
In the 5 short years of my little guy’s life, Shaun has shown a fierce desire to gain his independence at every milestone. Yes, he has a long way to go until he is ready to navigate this crazy world. Yet he is continually stretching the boundaries, reaching for as much independence as he can grasp. While John and I left, attempting to figure out what is safe and appropriate for him, given his personality, age, and food allergies.
During grade school, the mother of a friend I had would always say things like, “I don’t know how I feel about you going on the upcoming school field trip … I don’t think that the umbilical cord stretches that far.”
As a young girl, we all laughed at these comments.
As a mom, I understand the conflict at the core of these words.
As a food allergy mom, my heart knows increased fear that adds depth to the sentiment.
From the day they are born, children are always moving toward becoming independent! That is the natural way of things.
And although it is my job, as Shaun’s mother, to teach him, prepare him and let him go. This progression brings a cliche, feeling of bittersweet.
Bitter because I want to protect him, to keep him little because some days (even though I savor each moment), he is just growing up too fast.
Sweet because I am excited and proud as he learns who he is and all the adventures he wants to take.
But deeper than this is the fear of letting go because of his food allergies:
However, if I let those feelings dictate my actions, I am only going to struggle more in the long run. But more importantly, Shaun will be affected by these misguided actions.
This is where I have to be specific in my thinking.
The clearest example of this in my experience so far is Shaun starting school.
Before School: Shaun spent his days with his Mimi and me. It was an awesome setup, my mother and I were running a home child care out of her house.
I was able to watch Shaun grow and develop. He was getting daily socialization. I got to enjoy snuggles and giggles. I cherished this time with him!
Beyond the feel-good stuff of this setup, when Shaun’s (2 months old) eczema began, I was able to FULLY engage in the day to day needs of diagnosis and subsequent food allergy journey.
– Endless doctors appointments
– Extensive topical skincare
– Research and multiple opinions
– Daily doctor communication
– Nursing on a restricted diet for 2 years
– Skin prick tests
– Blood Labs
– Careful, food introduction
– Managing every hive-y face
– Always having epinephrine & safe food
– Keeping meticulous notes and food records
– Inhalers, antihistamines, antacids
When you care for a child in this constant capacity, knowing the risks to their life that exist outside your carefully curated environment, it feels impossible to let someone take over the care of your child. Never mind for 5 days a week for 7 hours a day.
For a long time, when I thought of sending Shaun to school, I felt utterly sick.
And this is where I have to be purposeful about my thinking.
As parents, it is easy to choose what is convenient, what feels good and is easy for us at the detriment of the child. (Even if the impact of these choices is only seen years in the future)
Restricting experiences, out of fear, is only going to cause struggles, anxiety, and frustration when it is ultimately time take that next step.
So despite fear, choose to:
Evaluate each circumstance individually for risk. (Some situations are just not safe yet – saying no to them is okay. As long as you have been thoughtful and the choice was not made out of fear alone)
Make plans and adaptations that will reduce risk when possible.
Take baby steps leading up to a big independence milestone
Educate and set expectations!! (This includes, your child, other family or anyone who is going to be involved with this new independence)
Learning to let your child go is always complicated and emotional. But letting go little by little; Saying YES to experiences leading up to a significant milestone will prepare you, but more importantly, your child to be successful and safe. Which is what I think all parents want for their child.
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You are kind and understanding. Yet I hesitate to write this because experience has taught me that even the kindest people sometimes struggle to fully grasp what I am about to share.
You see, I am not just a mom; I am a food allergy mom.
And that comes with a tremendous amount of constant care you can’t truly understand until you hold the title.
“Food allergy mom” was not a line item that I ever expected to add to my life’s resume … but here I am.
Why does this matter?
How we treat each other matters. Without being aware that I live with food allergies and what that looks like, it might cause friction in our daily interactions.
Sharing this part of my life with you will help us to strengthen our accord.
Your benefit: a deeper understanding of my life and an opportunity to act with compassion.
My benefit: being fully seen and loved in a reality where simple food is life-threatening to my child.
You can’t know what you don’t know. I get that … It would be unreasonable for me to expect you to be aware and understanding of food allergies when you have never truly been exposed to their reality.
So here is a glimpse of reality …
It is learning how to read labels … every single time you purchase a product.
It is knowing that sometimes milk is not called milk or that a company doesn’t have to disclose sesame oil in a product as long as the ingredients say natural flavors.
It is spending hours in a grocery store and coming out with no new food options
It’s about learning all the places food proteins hide. Because they commonly exist in non-food products. That means hand soaps, art supplies, makeup, beard oil, house cleaner, toothpaste, to name a few.
It is countless hours with doctors looking at test results that can’t tell you the severity of a potential reaction because the test only measures how likely it is that a reaction would occur.
It is scouring the internet at all hours of the night looking for answers.
It is learning how to cook again and rethinking all your habits in the kitchen because a single mistake can lead to cross-contact making food unsafe, even life-threatening.
It’s trying to inform your family, friends, co-workers, teachers what your needs are, making sure to be clear and accurate, without scaring them but without coming across as crazy and overbearing.
It is about kindly speaking up to educate someone when all you want to do is scream, “what are you doing?! that could kill my child!”
It is learning the many ways anaphylaxis looks and how to respond when the day comes that you see it.
It is finding accessible and affordable epinephrine, the medication that saves lives.
It is praying that you never have to use it.
It is about NEVER leaving home empty-handed. But instead with bags of stuff: auto-injectors, antihistamine, inhalers, wipes, extra clothes, and food!
It is about always mitigating risk. At the park, the library, the museum, the family picnic, the birthday party, the bus, the baseball game, the grocery store (literally everywhere)
It is about teaching my child to be aware of and respect his allergies. To advocate and speak up. Without making him scared, anxious, or feel less than and left out.
It’s about finding people who understand food allergy life and cherishing them.
It is about finding a place between fear and complacency so you can live life but maintain a level of protection.
It is about all of these things and SO MUCH MORE.
I often operate in the space of fear and anxiety, which is why sometimes I come across as unreasonable, overprotective, and maybe even a little crazy.
I spend a lot of energy pushing outside that fear because it is the only way to experience life. But some days it’s harder than others.
I hope you can empathize with the care it takes and the anxiety that comes with managing food allergies.
And maybe you value me enough to be mindful of your words and actions …
Here are 2 simple ways to accomplish that:
Don’t assume …
That this is a lifestyle choice, it has changed our lifestyle, but it was not a choice.
That a small amount of the allergen is okay, it’s NOT. Even trace amounts of food protein can trigger anaphylaxis.
That because you read a news headline you’re informed. Food allergies are multi-faceted. I promise it is more complicated than the headline. (I will know immediately if you actually read the body of the article)
Food allergies are the same as an intolerance … they are not!
That you need to suggest ideas to help. I know your desire to offer solutions is coming from a good place, but it just makes me feel more isolated.
Ask questions …
Can I do anything to make things safer for you?
Where do you keep your auto-injector? Can you show me how to use it?
Would you like to pick the restaurant?
Do you have any treatment options?
Where can I get useful information about food allergies?
Are you okay?
This is a lot to take in! It probably feels like too much … at least that’s how I felt when I found out I was a food allergy mom.
With time and practice, it feels more manageable.
Food allergies will always require extra care, but one day you will look up and realize you automatically account for them. With no cure at this time and anaphylactic episodes on the rise, your awareness and compassion are more important than I can express.
I sincerely hope this has not scared you away. In fact, quite the opposite!
I shared this to provide perspective to empower you as you encounter food allergies and anaphylaxis.
Now you have the information it’s your choice how to use it.
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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As an allergy momma, I understand this sentiment intimately.
Vigilance and planning make it so Shaun can have happy, healthy experiences out in the world. But you see sometimes even our best-laid plans (the ones based on trial and error, research and our care plan), fall short and end with some type of reaction.
Last week, we shared some ideas about How to Enjoy a Beach Day with Food Allergies. It seemed like a timely blog post as we were headed to our family cottage to enjoy the beach for a few days.
The day after our post went up, my mom (Shaun’s Mimi) and I began to plan and pack to take Shaun down to the shore for the afternoon.
Shaun safe food …. Check
Medication and care plan … Check
Blue Lizard Sunscreen … Check
Sand chair, sand toys & umbrella … Check
Long sleeve rash guard shirt … Check
Full coverage beach hat … Check
Extra 100% cotton, clean, dry clothes … Check
Finally, we have the car packed up and we head down to the beach.
We Arrive. Unpack the car, off to the sand to scope out a spot that seems open, close enough to the water, but not too far from the bathrooms and that will allow for easy egress should we need to head out in a hurry.
My mom and Shaun headed down to the water’s edge as I set up our little space. I put in the umbrella, got some towels set up and put our medications and food cooler in the shade.
I walked down to the water … and I took a nice deep breath of ocean air! I enjoyed the interaction between Shaun and Mimi as they waded a little deeper into the waves. Feeling grateful and peaceful I returned to our spot on the sand, settled into my chair and grabbed my book.
Not even one page of reading and Shaun was standing in front of me shivering. Bouncing up and down at his knees just a little bit … he was clearly uncomfortable. I suggested he lay in the sun, on the towel, so he could warm up and dry off a bit. But he continued to bounce and tell me “momma I can’t lay down.”
Finally, after a few minutes of frustrating back and forth about laying down to warm up, he asked to go to the potty. Off we went back up the sand toward the bathhouse, used the potty and then back to the sand we marched.
Hopeful that Shaun was now content, I planned on picking my book back up while he spent some time building in the sand!
Unfortunately, as soon as we arrived back at our spot on the beach Shaun started itching. For Shaun itching happens often so there was no need to panic or pack up.
Me: “Hey buddy, what’s going on?’ (I try to keep my questions open-ended so I am not giving him words he will just repeat back to me)
Shaun: “My knee pits itch”
Me: “I see that … any other spots itchy?”
But I could see he had already started scratching around his waistband and his crotch …
I decided we needed to take off his clothes to get a look at all his skin. Mimi and I help him get off his wet shirt and hold up a blanket as we take off his bathing suit (we are trying to teach him he can’t just be naked anywhere he wants … ahhhh parenthood)
The creases of his knees were red and puffy with hives but the rest of his body seemed okay. I wrapped him in the towel, sat in the shade with him lying across me while Mimi got us some ice packs from the cooler in an attempt to calm down his hives.
For the next few minutes, I tried to settle him. He rolled this way and that. He squirmed. He began to itch his ears and eyes. So I stood him back up and opened the towel to look at him again … he had hives on his torso, behind his ears and in the creases of his thighs. So I scooped him up in the towel and quickly made my way to the bathhouse where they have freshwater showers.
As soon as I turned the handle to rinse Shaun off he darted out of the water screaming “its ice-cold!!!”
Yes, it was time to go home …
We had not even been there for 30 minutes.
I knew with the way the hives were spreading that if we didn’t rinse him in freshwater and get his skin covered in clean dry clothes the hives were not going to calm down.
So back to the sand we went to get Mimi and pack up all the stuff. I didn’t want to bring Shaun back onto the sand so I sat him at the entrance (that was in my view 100% of the time), with a lifeguard.
Lugging Shaun and all our stuff back to the car as quickly as possible so we could return to the cottage to get his hives under control.
When we arrived it was straight to the shower, a dose of hydroxyzine, ointment and cotton PJs (long pants / long sleeves) And within about 30 minutes he was finally more comfortable.
Shaun stayed amazingly calm and happy despite the discomfort of the hives.
Was it life-threatening? No, not this time, thank God!
However, it was uncomfortable. It was stressful. It ended our afternoon at the beach before it even really began. It was disappointing and frustrating but it will not stop us from going back!
What caused his hives? Almost impossible to answer. Often with Shaun’s hives, we don’t know the exact trigger: too hot, too cold, something in the ocean, the detergent residue on his bathing suit, the sand, something on the toilet seat that contacted his skin? And yes, this makes me crazy because without knowing the cause we can’t modify our plan to prevent it next time.
See, allergy living can put you into a bubble if you let it. You must be relentless and determined to keep engaging even when, despite your careful, thoughtful preparation, you end up having a reaction.
John and I feel it is critical to teach Shaun how to avoid becoming isolated! How to live a full safe life even though sometimes his beach trip will be cut short due to hives.
Here is to a hive free beach trip next time,
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A year ago today Shaun’s name was 5th on the waiting list to get into your school, CREC Montessori Magnet. He was 3.5 years old and had a list of 8 food allergies. Unlike other parents, I did not obsessively check the progress on the waiting list throughout the summer because I was secretly hoping that Shaun’s name would not make it to the top of the list. This momma’s heart was not ready to let anyone else manage Shaun’s care and learning.
I prayed that if we were supposed to send Shaun to school, he would get a spot. That if Shaun’s name made it to the top of the list, I would trust God’s plan and know that Shaun would be safe and genuinely cared for.
Well, September rolled around, and we had not received notification that Shaun had been placed. John and I were okay with that; Shaun would spend another year with me, and we would reevaluate our next steps in the new year.
A few weeks into September the call came. Shaun had a spot in your primary classroom …
I wish I could say I was ecstatic. I wish I could say I ran down to the school to sign him up that very day. But the reality was I felt stunned, overwhelmed, and scared. We had only a few short days to make an ENORMOUS decision, that would lead our little family into new and unknown territory.
Even though John & I took the weekend to talk through the pros, cons, and logistics of accepting Shaun’s spot, I couldn’t forget the prayer I had prayed. I knew I needed to find the courage to trust God’s plan unfolding in front of us.
You see, since Shaun was tiny, we have researched, planned, and strategized to reduce the risk of an anaphylactic reaction. We have spent countless hours teaching him how to keep himself safe while maintaining a close hold on his environment. So although I am a momma of deep faith, more than I would like to admit, I rely on the illusion of control I have over Shaun’s environment to quell the anxiety I feel.
Giving that control to you, finding the strength in my heart to trust you with my most precious gift is the hardest trust I have ever had to give away.
We accepted Shaun’s placement.
And I spent the next few days preparing everything Shaun needed to start school …
I also spent the next few nights awake, playing out every scenario you can imagine in my head.
The day after a failed milk challenge that ended with an anaphylactic reaction (a story for another day), I drove Shaun to school and watched him walk in the doors and prayed you would take care of him!
Over the last nine months you, Ms. Jackson, have proven to be the most incredible teacher we could have ever imagined working with!
You showed us great kindness and patience as we shared with you Shaun’s history and the many things we felt we needed to keep him safe in school.
You truly listened to us, never once dismissing a concern or accommodation we brought to you.
You maintained excellent communication to ease our hearts in the first few weeks of this transition.
You asked questions! Questions that were thoughtful and relevant that would lead to a safer and fuller experience for Shaun in your classroom.
You gracefully accepted my frustration and fear when Shaun had an unsafe candy bar in his backpack, and you took responsibility.
You engaged in the development of Shaun’s 504, helping to build a robust plan to keep Shaun safe so he can focus on learning.
You melted my heart at our Mother’s Day tea when you found cupcakes, clearly labeled and free of all of his allergens.
You fostered a classroom in which Shaun’s peers would be aware and compassionate towards him!
You became Shaun’s advocate in my absence! You spoke up in meetings when others tried to deny his rights. Making sure that all the staff in your school are aware of who Shaun is and what his needs are! You allowed Shaun to expand his world. Yes, through the classroom lessons he was given, but also through the safety he felt with you.
Today, as Shaun heads off to his last day of school before the summer break, I am overwhelmed by all the experiences Shaun has had because of you!
Gratitude doesn’t adequately express the emotion I feel. However, it’s the best I can convey at the moment …
For the hours you have spent working with us.
For the research you did on your own time.
For the love you put into your work.
For watching over Shaun as if he were your own.
Thank you … with every part of me, thank you!
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