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!
As of at least August 2018 (though some sources mention it as early as May of last year), there has been a shortage of available epinephrine for consumers.
This is a scary situation, as epinephrine is the single most crucial remedy for an anaphylactic reaction to a food allergy. Proper and timely administration of epinephrine is often the difference between a person living or dying from a food allergy.
FARE, of course, has a great page about the shortage that they continually update. This same page also links to HealthMart, which has a tool that you can use to find independent pharmacies in your area that may have the availability of stock of epinephrine.
There are also several other places (MarketWatch, AllergicLiving, The Lancet) that comment on the issue, and each has some good advice/tips on dealing with the shortage and finding available epinephrine auto-injectors in your area. Most of these are several months old, being written after the initial deficit was announced, but still, have relevant information.
Despite all of that, you do have options.
Extended Expiration Dates
Pfizer and the FDA have issued extensions on the expiration dates printed on some lots of EpiPens, to alleviate some of the shortage (Link). “The extension of the expiration dates does not apply to EpiPen Jr® (epinephrine injection, USP) 0.15 mg Auto-Injectors and its authorized generic version. Patients must continue to adhere to the manufacturer’s expiry date labeled on EpiPen Jr® 0.15 mg and Epinephrine Injection, USP Auto-Injectors 0.15 products.”
Independent Studies on Effectiveness
In addition to the above, there have been independent studies conducted indicating that EpiPens retain a high level of concentration and effectiveness long after their labeled expiration dates. CNN posted an article that links to one such study (and several other resources)
We have always kept ALL of Shaun’s expired EpiPens as backups for his valid, non-expired, auto-injectors. Our thought process has always been that we’d rather have expired epinephrine, than none at all.
Alternative to EpiPen
There are alternatives to EpiPens as well. Trained medical professionals can, and will, sometimes use epinephrine drawn from a vial and injected via syringe. Most people who aren’t trained professionals though, generally aren’t comfortable with this method, especially in a chaotic or tense moment when you, or someone you care about, may be in danger.
Auvi-Q is a relatively recent addition to the auto-injector market, and in a lot of ways is already better than the EpiPen (in our opinion). It is considerably smaller and more comfortable to carry and tends to be the one we grab if we want to just put one in our pocket, rather than bringing Shaun’s entire backpack with us somewhere.
The Auvi-Q also has voice instructions on how to administer it, should you ever be in a situation where someone may be completely unfamiliar with how to give an auto-injector. Auvi-Q offers its “Kaléo Cares Patient Assistance Program,” which can significantly reduce, or even offset the cost of their auto-injectors completely.
More treatments are being developed every day. Hopefully, Big-Pharma will embrace the scientifically-proven concentrations that epinephrine can maintain for years after their labeled expiration dates. And ideally, shortages will start to decrease soon.
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In January of 2017, Shaun accompanied me on our weekly trip to the grocery store. As we made our way through the produce section, we began our usual conversation about what foods are Shaun Safe and what foods are not. (Although Shaun was only two years old I believe these conversations were/are critical to helping him learn about navigating his allergies.)
Me: Shaun, what are these?
Shaun: Kiwi, I’m allergic.
Me: Great! And what did momma just put in this bag?
Shaun: Cucumbers, I love cucumbers. They are Shaun safe!
Me: I love cucumbers too. Okay now, what do you see over there?
Shaun: Peanuts and Tree Nuts! Not Safe! I am allergic!
A woman in the produce section with us overheard our conversation. She stopped me to ask about what Shaun’s allergies were. I proceed to share Shaun’s allergy list with her. She seemed surprisingly unfazed by the long list of things we avoid, but I was grateful that she showed an interest in food allergies.
What happened next though threw me for a loop!
She continued the conversation by telling me that it was a shame that Shaun had missed the newest development in the medical food allergy world. She wanted me to know that it had been all over the news and social media that “early introduction” to allergens such as peanuts would prevent food allergies.
I smiled at her and thanked her for the information. I know that this lady was trying to be kind, that her ignorance was due to lack of experience and knowledge, but at that moment, I felt alone, misunderstood, angry, and sad. It bubbled up all the emotions that I should have done more for my child, even though I knew that I had done everything I possibly could!
Okay, let’s break this down.
I was aware of the new guidelines that the NIAID had adopted regarding the early introduction of peanuts.
I was aware of how headlines around this gave an inaccurate picture of the depth and details within the actual guidelines. (This conversation was confirming that)
I was aware that although the NIAID was releasing the guideline now in 2017, Shaun’s allergist recommended early introduction in 2015; however, Shaun was not eligible!
For the record, according to the guidelines Shaun’s eczema would have put him in the high-risk category for a peanut allergy. As the guidelines suggested, we talked with all the doctors caring for Shaun and decided that we would introduce peanut immediately as long as he showed no signs of reaction based on both skin tests & IgE blood work. Unfortunately, he was already reactive to the peanut proteins, so strict avoidance was recommended until he is old enough for us to consider immunotherapy (which is a post for another day but something we hope to take advantage of!)
Below are some ideas to consider if you ever find yourself on either side of this interaction.
To anyone, not living with allergies, who find themselves in the position of the lady in the store:
Please be careful not to think that I, or any allergy, parent, could have avoided this allergy by exposing my child younger. If I could have … I would have, but it wasn’t an option for us.
Read more than just the headlines! Food Allergies are complicated, and there is often critical information that is found in the body of the article or in the research that provides a complete understanding.
If you engage a food allergy person to listen to them. You will learn! (If grocery store lady asked me if I heard the new guidelines or what I thought of them she would have learned something new!)
It is always safe to offer a statement of support, hope, or praise! (The grocery store lady would have made my day if she told me she was impressed that I was teaching my son how to take care of himself!)
To anyone, living with allergies, who find themselves confronted by the lady in the store:
Take a deep breath!
Assess if you can use this moment as an opportunity to share and spread awareness.
Remember how little you knew about allergy life before you were forced to live it. Think about how long it took you to learn it well. Not all people live with food allergies, and unless you do, you can’t understand one hundred percent of it. So be informative and kind! This will help grow awareness and a positive name for the allergy community at large!
You will encounter people like this at times, and it can weigh you down emotionally. Rely on the people in your life who DO understand; Allow them to be a balance point!
You are doing a great job! And if you don’t have someone to tell you that email us! We know the value of support from people who live this life and want to share that with you too!
Living well with food allergies is really about keeping perspective and understanding that a lot of the ignorance towards our community comes from lack of information and exposure. So let’s share information and be open to letting people see our life with a hope that in time, people’s grocery store conversations will sound different than the one I had that winter day in 2017.
To keeping perspective,
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