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?
In just two weeks, on February 27, it will be National Chili Day!
I am not surprised at all that we celebrate chili day in the middle of winter because it is a perfect winter meal! Warm, filling, and versatile.
As a food allergy family, we are always looking for recipes that allow us to customize the ingredients – and chili fits the build. Chili is one of those meals where substitutions and flexibility do not ruin the integrity of the dish.
Here is what I mean
Bean type does not work for you? Pick a different bean variety
Make it super spicy or not by increasing or removing the hot sauce or hot peppers
Pick your protein! Beef chili, turkey chili, chicken chili, bean chili
Add corn or diced peppers
As long as you maintain the proportions of the original recipe, you can substitute to your allergy needs and taste!
Although our family has a few tried and true chili recipes, this option requires almost no planning to get on the dinner table.
In our house, we have all the ingredients called for regularly. Perfect for a night when the fridge and pantry seem empty. Or the times when you forgot to take something out of the freezer for dinner.
This 3 bean chili recipe got added to my recipe collection when my mom and I were early in our home daycare career. We provided breakfast, lunch, and a snack to the children in our care. USDA food programs that supported us sent the recipe in a monthly newsletter.
And you guessed it; this recipe appeared in the February letter.
Over time the recipe has changed little by little to accommodate my taste (the original was a bit under-spiced in my opinion) As well as to accommodate Shaun’s food allergies.
Here are the reasons I LOVE this recipe:
It is yummy – For me, the taste of a dish is always #1. The flavor should not be compromised in something allergy-friendly.
It is a quick, simple meal. – one cutting board, one-pot: easy clean up too!
It is packed with protein.
It is a plant-based option – We are not vegetarian or vegan, but I do like to have a few plant-based meals that we can filter into our weekly meal rotation, helping to balance meat consumption.
Toppings are customizable in the dish! Make it easy to accommodate allergy needs and personal taste.
I hope you give it a try!
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It might only be the end of January, but love is already in the air. As you might be learning, when you live with food allergies planning for holidays is an essential part of life.
Valentine’s Day is a day to celebrate the love and friendships we have. We mark this occasion with special dinners (not always allergen friendly), flowers (that make some people sneeze), stuffed animals (AKA a dust mite house), and candy (often containing a top 8 food allergen).
It can be hard to love a holiday that is so hyper-focused on traditions that can leave you feeling anxious, itchy, or worse. But, with some thoughtfulness and flexibility, we can make our Valentine’s Day plans safe and enjoyable.
If your child is the one with food allergies, it is important to find out what events, activities, and treats the school plans to have.
Check-in with your child’s classroom teacher. In my experience, they are the best point of contact because they know celebration plans for the classroom as well as any school-wide plans.
Check-in with the PTA. Your classroom teacher may be unaware of the PTA’s activities and events, it is important to contact them as well.
Kindly ask questions to make sure the plans are safe for your child. Remain reasonable and work together to adjust any potential risk spots.
Offer to help! Giving your support both in ideas and time always eases the stress for everyone involved.
Remember, often, the school staff and the PTA don’t manage food allergies day in and day out in the same capacity we do. Use this opportunity to share your knowledge and make the environment safer for not just your child but all those with food allergies. You can positively impact the culture of the school.
Here are a few other tips on working with the school:
Some schools choose not to have any food or candy-related items for celebrations. Find out your school guidelines on this before you start trying to fix a problem that might not exist.
When asking questions to the teacher and/or PTA, keep in mind that some art and science-based activities contain food. Ask about this directly! (Experience has shown me that when you ask about food, people are thinking about food getting consumed, not about hidden food proteins in other activities.)
Know what boundaries need to be in place for safety. For example, we don’t need to exclude all of Shaun’s allergens from the classroom to keep him safe. If the celebration includes fruit and yogurt, we have precautions in place to keep his food separate, provide him with a yogurt alternative, clean his eating area before he sits to eat and post snack clean up of surfaces and hands. Some people’s food allergy needs require stricter boundaries; Know your needs and advocate to have the boundaries in place.
Non-Food Valentine’s Fun
These days giving experiences as a gift is hugely popular – and I get it! It emphasizes spending time together, communicating, and making memories! While downplaying material things that clutter our lives.
Here are some great, allergy-friendly, low-cost activities you can plan as part of your Valentine’s Day activities that don’t include food!
Hand Made Crafts
Books about Kindness and Love
Community Kindness Acts
A simple internet search will reveal a tremendous amount of ideas for clever, non-food Valentine’s Day treats. These are some of my favorite’s:
Stickers – “Valentine, I’m stuck on you!”
Crayons – “Color your heart out, Valentine!”
Bubbles – “Your sweetness blows me away!”
Watercolors – “Hope you have a colorful Valentine’s Day!”
Glow sticks – “You make my heart glow!”
Rubber Ducks- “I’m a lucky duck to have a friend like you!”
Bouncy balls– “Valentine, you make my heart bounce!”
Pencils– “Write on Valentine!”
Although I have focused a lot on non-food options, creating safe and yummy meals and treats for Valentine’s Day is legitimate and encouraged. But even us food allergy folks can get caught up in being food-centric, and I wanted to show the variety of celebratory options beyond food.
Also, if you still want to share candy as part of your Valentine’s Day celebration, try to see out an allergy-friendly option. (Just a reminder always read every label every time, even with an allergy-friendly company!)
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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