Like everyone else, over the last 12 days, our reality has changed quickly and dramatically! To help support our healthcare system as well as to keep Shaun healthy (his asthma diagnosis complicates things a bit), we have taken social distancing very seriously.
Shaun school is closed indefinitely. Per the governor, the earliest Connecticut schools can reopen is April 20th, but today he indicated that it is likely they will remain closed until fall.
John is working from home at least until the end of the month. (But honestly, as the days pass, I feel that he will be home longer.) He is set up in a spare room upstairs, allowing him a semi-quiet space as Shaun and I move about the rest of the house.
I, too, am home, trying to write blog posts and plan podcasts in between the beckoning calls of a five-year-old who is trying to make sense of all the changes.
Changes we all are trying to make sense of. How does life look with:
Working from home
Not seeing family & friends face to face
No church or faith formation
No hanging out with neighbor friends
You get the idea, your living it too!
Except for two trips out to the stores (Grocery & Hardware) for necessities and two trips for John into work to pick up equipment, we have only had social interactions virtually. I can’t imagine if we didn’t have the technology how much more difficult this would all be.
Nothing right now is certain, we don’t know how this is going to continue to play out. I have found myself wondering if it is worth diving deep into a new routine with Shaun only to need to change it again in a few weeks. But could it be months?
I am unsettled, and some moments are harder than others. At the same time, I have experienced gratitude and joy!
We are grateful to be home and healthy; To be together! We have found joy in small moments reading books, puzzling, learning about animals, creating art, cooking together.
We are getting outside every day, no matter the temperature or weather! Playing in the yard and walking around the neighborhood has become a daily occurrence. Fresh air works wonders for all of us.
We are holding up as best we can; Learning as we go. Making the best out of an unprecedented situation.
It is no surprise that food allergies and an asthma diagnosis complicate the current Covid-19 pandemic and social distancing to a further degree than most.
Around the same time we got word that the schools were going to be closing, I started to see pictures of empty grocery store shelves. And although I am not one to stockpile food, my allergy mom brain did immediately feel worried that if shelves were being cleared, I might not be able to find the safe foods or brands that we often use to feed Shaun.
I used Shaun’s last day of school to get to several stores (because with food allergies, you can’t just get what you need at one store), intending to be stocked for about three weeks.
On this day, I did not pay attention to prices or what I could get on sale. I focused on what Shaun safe options were stocked, use by or sell-by dates, and how much I could store at home.
I was grateful that I had been able to stock up on so much safe food. I did feel a twinge of guilt that as a food allergy mom, I had not been already more prepared for a possible emergency, then I let that feeling pass as best I could.
The next day, as the pictures poured on on social media and local news of empty grocery shelves and check-out lines with carts overflowing as people panic shopped, I realized just how close I had come to not finding safe food.
The good news here is that the supply chain is not broken like it might be if there was a natural disaster. The empty shelves are a result of people hoarding and over buying out of panic.
As of today, we are still in good shape for food. But I will tell you that I am nervous about what we will find or what we will not find when we begin to restock next week. Hearing of others in the food allergy community are struggling to find specific products makes me anxious.
But in an effort to focus on what I can control, here is my plan.
Go to the store open-minded. Maybe it won’t be as bad as I am thinking,
Talk to customer service if I can’t get a safe product I need for Shaun. Explain his food allergies and see if they know when they will be getting stock or if they would be willing to contact me when they do.
Ask family and friends to keep an eye out for specific products if I can’t find them. Then I can plan a pick-up or drop off with them.
I am hopeful that taking these steps, we will make it through this with the food we need for Shaun. But once again, food allergies complicated an already complicated new reality.
12 days ago, I began to look for information about covid-19 and asthma. Knowing that sickness can flare Shaun’s asthma, I was curious to find out if there is any link. At that point, there was not that much out there.
I then spoke with Shaun’s allergist (which I recommend you consider doing with your allergist) who told me that there is not enough information yet to answer a lot of the questions I had. She did also remind me that respiratory viruses (Covid-19) flare asthma, which means that the medications and care plan you should already have will be sufficient!
Since then, some information for asthma patients has been released.
The CDC & AAAAI have provided reliable information and recommendations.
The American College of Asthma and Immunology has released a statement about the growing albuterol inhaler shortage. (Don’t panic! Remember that each inhaler has 200 inhalations.)
Based on the information from Shaun’s doctor and these resources, we are keeping Shaun safe by:
Take daily asthma maintenance medications as prescribed to make sure asthma controlled.
Took inventory of all asthma medications in the house. Checking amounts and dates on inhalers and nebulizer medications. (We have the medicine we need at home already – this was more of a double check.)
Review the asthma sick plan. Making sure we have no questions for our doctor.
Coordinate with the school nurse to get back the asthma medication we had provided until distance learning is over.
I am taking a pragmatic approach to all this as much as possible.
I am changing my anxious thoughts from what could happen to how I can best prepare. (Or reminding myself that I already am.)
Remembering that if Shaun does get sick, we have a plan and medication to help us control the asthma flare, just like with any flare-up caused by a respiratory virus.
Remembering that social distancing is a temporary measure for a much greater good!
Remembering that even in all the change and chaos, JOY can be found, often in small moments!
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?
Our book reading, dinosaur loving, order seeking, joke telling, karate kicking, joy spreading four-year-old. Looking at him today it’s hard to believe how far we have come!
For some, the food allergy journey begins with eczema.
You see, just two short months after Shaun was born he began to show signs of eczema on his face. It was January in Connecticut, and so Shaun’s pediatrician advised us to put a humidifier in his room and to use a bit of baby eczema lotion. Unfortunately, within a week, Shaun’s skin was getting worse instead of better.
And just like that our world got turned inside out! My Mama’s heart knew that this wasn’t just winter eczema.
February & March contained numerous doctor appointments. John and I were in contact with Shaun’s pediatrician daily to check in about the condition of his skin and what skin care plan we were using.
At the end of February, I began to insist that we get referred to an allergist because it is well documented that eczema and allergies are often connected. It felt like overnight I had to become an advocate and liaison between the pediatrician, the pediatric dermatologist and the allergist. I was making sure that Shaun’s care plan included the perspectives of all his doctors.
I wish I could say this is where Shaun’s story began to get better. Instead, Shaun’s skin continued to get worse. At this point, he was covered from head to toe, with angry, red, infected, weeping, bleeding eczema.
As parents, we carried on because we needed answers. Shaun required solutions.
But we were tired, first-time parents. Our hearts were breaking at the inability to help our son. We were angry confused and overwhelmed.
Thank God for our support system throughout this time. Family and friends stepped in to shop, cook, clean and pray so John, and I could stay focused on Shaun’s care.
We tried many natural remedies, creams, ointments and prescription options to calm his skin. We were aware of soaps, detergents, perfumes and environmental irritants that could have been affecting his skin quality. Because I was nursing him, we began to experiment with my diet to exclude foods commonly known to cause eczema in babies. None of these adjustments had any impact.
Enter, Dr. H.
She was the covering allergist for Shaun’s weekly allergy appointment, and since that day she has been the only allergist we see! She took her time. She listened to what my observations were. She asked questions and answered all of mine. She checked in by phone and would often spend 40 minutes in conversation with me to make sure I was comfortable.
It was Dr. H’s tweaks to Shaun’s care plan, in April, that started to turn the tides with his skin quality. Her plan was more aggressive than I had hoped for, but we were desperate. It was time to make some concessions. Shaun was one low-grade fever away from being admitted to the hospital with a blood infection (due to eczema).
Dr. H told me that our previous care plans were like using a bucket brigade to put out a fire in twenty story building. And it was time to match the intensity of the care plan to the severity of Shaun’s eczema.
On April 22nd we began:
A substantial ten-day antibiotic (for the staph infection on his skin)
A five-day oral steroid taper (for eczema)
An antihistamine every 8 hours (for the itch)
Along with a strict topical skin care regimen that we completed with every diaper change!
He also started a prescription formula (and I pumped at his feeding times with the hope of returning to nursing him once his skin was manageable)
We All held our breath as he tapered off the steroid, praying that his skin would stay calm. And it did!
In May we were finally able to talk about testing him for food allergies and starting him on solid foods. And over the next several months we used blood tests and skin tests to see what foods (and environmental) allergies Shaun had. We were told to practice strict avoidance. So before he was a year old, we were carrying epinephrine and avoiding:
Cod & Tilapia
Getting answers was a giant step forward. Since then we have spent three years learning how to live in a food-centric culture.
Building routines in our kitchen that help keep Shaun safe
Learning how to read labels and grocery shop (I have cried more than once in a grocery store)
Cooking with restrictions
Strategizing how to attend social events
Uncovering places allergens hide
Educating Shaun and his caregivers
Challenging allergens, with doctor supervision, to open up Shaun’s diet (he is down to 8 allergens)
Helping other allergy families
And so much more.
Today, with our feet under us, looking back is emotional! It was long, beyond hard and at times incredibly lonely! I am filled with gratitude for John, the doctors, our family, and friends. And I am grateful for Shaun and the joy he radiates into the world in spite of it all!
If you have a story that looks the same as Shaun’s, know that you are not alone!
And if you are living this right now, know that it will take time. It is hard and cumbersome now but piece by piece you will find strategies to recreate your life with food allergies. If this is the case, I hope that you find help and community here.
To looking back,
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