Hindsight is not always 20/20: DR’s story

With most life threatening issues and mistakes in life, when we look back on them we can clearly see the cause and how it could have been avoided.  Unfortunately, many medical conditions like food allergies are exempt of this clarity, even after the fact.

For the first 18 months of his life, DR clearly had something going on.  He was sick every two weeks, constantly in and out of doctor’s offices, and sometimes admitted to the hospital.  His eczema only got worse with each flare, and nothing seemed to really “cure” it.  Doctor’s were unsure and sometimes baffled by his issues.  My husband, Justin, and I were exhausted and at our wits end.

When we finally found answers during our first allergist appointment for some of his problems we looked back to all we had dealt with and could not find a clear time when that had been the cause.  In these instances, the food allergies and their reactions were unavoidable.  The proceeding incidences due to the food allergy are ones that fall into the hindsight-is-20/20 category.  Once you know what to look for, mistakes become neon reminders of what you should have and could have avoided.

Hindsight with food allergies may not always be 20/20, but I can guarantee that foresight for a food allergy mom is even more calculated and precise.  Our knowledge of what goes into our children’s mouths, comes in contact with their skin, and is carried by others is so vast that we can catch almost any danger….almost.  Issues arise and the cycle repeats when new allergies arise for which we are unaware and unprepared.  You will see this many times throughout our posts, especially with DR and MH with their many allergies.

~Lacey

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Tips for getting an affordable Epi-pen

Food allergies are scary, exhausting, and difficult to manage.  From the first reaction, the doctors’ appointments and testing, the food-purge, and the education and advocation of others, there are so many bases you have to cover, and so many discussions around each.  However, people often forget to mention the costs.

When I worked in a Medication Assistance program, we often used a pharmacy resource call RXOutreach that sold expensive medications to patients who were no more than FPL.  Unfortunately, looking now they are charging $200 for a pack of two as well.

Those who don’t have insurance and are no more than 200% of the FPL are eligible for Mylan’s Prescription Assistance Program (PAP); however, the paperwork required and turnaround time for processing could be 2 months or more.  The application has to be printed and mailed in with financial documentation, proof of no insurance, and a prescription from your doctor.  The application can be printed here: mylan-epipen-frm

In one of my online support groups, citizens from Canada have suggested having your doctor send in your script to a Canadian pharmacy and have it mailed to you.  The cost would then be between $5 and $20.  This could take a month to receive.  My only concerns with this is knowing whether or not the pharmacy you use is legit and the fact they are not FDA monitored/approved.

If you have insurance, do not fear; there is still an option for you. Mylan also offers a My EpiPen Savings Card, boasting a $0 copay for 6 pens for those with insurance.   This, of course, comes with an asterisk.  The card only covers $300, so if your insurance still expects you to pay $300, then that is your responsibility.  Lauren Reiniger has a blog post about her own struggles with the cost of Epi-pens despite the fact that she has insurance: “The EpiPen Might Save My Life, But Not Before it Breaks My Bank“.

Unfortunately, there are those who cannot wait for a prescription from Canada or the drug company, those who aren’t eligible for prescription savings, and those with no money, so what choice do they have?  Is it fair that they should take the chance, risk their life?  The issue of food allergies already has so many added costs, it doesn’t make sense that this one life saving drug should be so inaccessible to those who really need it.

~Lacey

*Permission granted by Lauren Reiniger to mention/link to the post “The EpiPen Might Save My Life, But Not Before it Breaks My Bank“.

The sister-hood of mother-hood

As we have repeated throughout several of our posts, living with a food allergy is mentally and emotionally trying, difficult, and draining.   The main point of this blog, though, is to connect and create companionship for any mother having to deal with a child’s food allergy.

Meal-planning, grocery-shopping, budgeting are all chores that some adult member of the household must do, so that the family can eat.  These are often not events that you think to invite your friends along, especially if you are a food-allergy mom.  This part of dealing with food allergies can be very time consuming and very lonely.

It doesn’t have to be.  All those hours you pour over recipes and meal plans to come up with just one weeks worth of ideas, those 3+ hours spent in the grocery store scanning every ingredient list two or three times, and the countless recalculations of your budget to ensure you can afford all the peanut, tree nut, egg, milk, soy, and corn-free alternatives without having to take out a second mortgage, do not have to be done alone.  In fact, if we moms come together and share our meal plans, recipes, grocery lists, and budgeting saving secrets, then life with food allergies would be much more bearable.

If it wasn’t for my rapport with Hope – our text message successes when we find a new budget-friendly alternative, pinterest recipe, or just a kind stranger with sympathy for our struggle –  then I’m not sure how I could make it. The countless support groups available to moms both in person and online are amazing and something to be celebrated, especially in a world that is so accessible yet isolating in social media.

The issue of food allergies should never make anyone feel alone.  It is such a common occurrence nowadays, that everyone should have someone to talk to.  If you ever feel like you are alone, then please, know you’re not.  Hope and I are here for you, if no one else is. We would love the opportunity to add you to our umbrella of moms.  After all, mother-hood is only an extension of the sister-hood of life.

~Lacey

Perfection

As a mom I have, at times, striven for perfection.  Especially in today’s society where our lives are broadcast on social media, and judgement abounds around every mishap.  The past month, I have seen as the world has sought to “crucify” parents who have made unintentional mistakes (the gorilla and alligator incidents):  critics call them careless and avoidable.  Of course these situations can be deemed avoidable now.  As it’s always said “hindsight is 20/20.”

I have experienced several of these moments in my own three years as a mom.  Many of these experiences were due to my son, DR’s food allergies.

Since I found out, he had these allergies I have blamed myself for plenty, even things that are beyond my control.  First, I blamed myself for the fact that he even had allergies.  I am allergic to tree nuts as well as other environmental elements, so I assumed that my genetic make-up was the cause of his allergic tendencies.  It took me a very long time to realize that I had no control over this.  I could not have predicted in a million years that he would develop his peanut and egg allergies because of my biology.

Then came the guilt when he would break out for no known reason.  I would scour ingredient lists and pour over food diaries to find the culprit, only to be disappointed when it was something I had missed earlier that caused the reaction.  I would beat myself up for days after he had healed, determined to overcome my own stupid, fallible, human nature.

Finally, I felt less than human when he would catch me eating something he couldn’t have.  I was lowly, unworthy of his love because I expected him to go without when I couldn’t.  I would vow not to give into the cravings.

So as you can see, I alone have placed this blame; unfortunately, this is not the end of it.  I have been on the receiving end of unsolicited and cruel comments about my parenting by many others.  When we had to rush him to the Urgent Care because of a reaction to peanut butter months before his diagnosis, the doctor basically accused us of feeding him an egg product to which we knew he was allergic.  When he breaks out it his eczema rash, people constantly comment like we aren’t trying to fix the situation, like we are the reason he has this issue.  When he ended up in the hospital (non-allergy related), a close friend called to inquire that perhaps his illness was a punishment for the fact that his father and I lived together before marriage.  All of these comments were unnecessary and unwanted.  They did not help us.  In fact, they caused more issues.  They made me doubt myself as a parent, made me work harder toward an image of perfection I could never reach.

I couldn’t bear it anymore, so I stopped.  I stopped striving for perfection, and instead focused on those things I could do to protect my son.  I spent less time listening to others and more following my intuition.  Had I continued listening to and caring about these comments, I would have lost everything:  my self-confidence, my mind, and my relationship with my amazing son, but by accepting my imperfections, I now have everything.

~Lacey

Epi-pen Updates

Given the life-threatening nature of severe allergic reactions, it is critical that patients and caregivers be trained in the proper use of auto-injectors. The U.S. Food and Drug Administration (FDA) has made updates to the patient instructions for epinephrine auto-injectors. Please note that there are no changes being made to the devices themselves. The updates […]

via Updates to Instructions for Use of Epinephrine Auto-Injectors — FARE Blog

Even when it’s not about food allergies, it is

***DISCLAIMER:  This is a long post.  The relevance to food allergies is explained about halfway down.***

I have been a little slack in finishing and publishing posts this week. Not because of DR or anything relating to food allergies, but because of JN, my one year old, and a febrile seizure which caused him to be hospitalized.

We have joked for the past year that JN is our easy child since he has not been sick like DR was the first year of his life.  In fact, JN has only had one other illness:  a quickly passing stomach bug.  Other than a low-grade fever from the stomach bug and some teething irritation, JN has never had the issues we were accustomed to…that is until this past Monday.

Both boys dealt with symptoms of what looked like the everyday cold over the weekend.  They had some nasal congestion coupled with a (slightly alarming) barking cough.  Neither of them spiked fevers or showed any other sign of malaise, so we took them to daycare on Monday morning.  At daycare we were told that some of the teachers and other kids had the same thing, but it didn’t seem to be of concern; however, at 4:26pm I received a call from daycare saying that JN had a fever and needed to be picked up.  While I tried to reach my husband, Justin, I received another call saying JN was having a seizure.  At this point, I clocked out of work, and rushed to pick him up.

Due to crazy traffic patterns and trains, I was delayed and never made it to the daycare.  Instead, they had to call for an ambulance and my baby was rushed to the hospital.  By the time I was able to find him, he was still seizing with a team of 17 people working to correct the situation.  When they were finally able to start an IV they administered two rounds of medications that finally stopped the seizure.  This was 45 minutes after the seizure had started.  At this point several nurses and doctors started explaining to me what was happening, concerns they had, and asking questions about previous medical histories.  I tried to answer as best I could, but I was in a daze of panic and fear.  I recall one of my first responses when I saw that he was not wearing a diaper that “I forgot to bring diapers.”  As family members started to arrive even more questions bombarded me, and I didn’t know how to answer them all.

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Finally, Justin arrived with DR, and the discussion transitioned to who was going to take DR and what he could eat.  At this mention, I quickly snapped out of my panicked-mama funk, and started making a plan.  These were questions I could answer and a situation I could control.  I explained where he could eat and what he could have.  There was already a plan in place at daycare to use extra foods we had dropped off for the days he couldn’t eat the school meal. We had plenty of foods at home that were all egg and peanut free.  Our families have been trained in DR’s food allergy plan, and they were prepared.

Over the course of our two-day hospital stay I received many calls and updates on DR, and I was reassured of his meal and snack plans.  Because of our months of preparation since his diagnoses, we now know that no matter which situations may take us from him, we have friends and family who love and care for DR so much that they are as focused on his food allergies and keeping safe.

~Lacey

But how do you know?

DR has been officially diagnosed with a food allergy for about 18 months.  I still remember the appointment that day in October.  He skin was lashing out for an unknown reason, and we were excited that we might discover the reason why, hoping it was something easy and simple like changing laundry detergents.  Never did I think that day would change our lives as much as it had.

Since my teen years I have had my own experience with allergy tests.  The pricks followed by the burning and itching.  At DR’s appointment it was not clear what he was allergic to, so they began by testing for the most common allergens.  Since he was a toddler they decided it was best to prick his back.  I helped him undress and sat him in my lap, his big eyes smiling up at me, and then it began.  He tried to jump, squirm, just get away.  With each pricks he screamed.  Once the nurse was done, I let him hop down.  He backed away to the corner and did not want to be touched.  My heart was broken for him.

Sadly, the worst part was yet to come.  Since we had to wait and see what reaction (if any) he would have, he could not put his shirt on, and he most definitely could not scratch his back.  As dot after dot turned red and he tried to reach them to scratch, my heart sank even more.  Finally the nurse and doctor returned.  DR’s spots were examined.  He was diagnosed with an allergy to cats, dogs, some trees, some grasses, and then eggs.

I was speechless.  I had never heard of anyone being allergic to eggs.  Looking at the dots, I noticed that the reaction didn’t seem that bad, so with a hopeful note I asked “how bad is the allergy?”  The doctor informed me that we could not necessarily determine that by just the rash reaction.  So in order to know more, he had ordered some blood work.  Wonderful…even more sticks and holes.

We drove to the children’s lab and prepared and waited.  Finally, when we were called back, I sat him in my lap and was instructed on how to hold him best, so that his arm couldn’t move.  The nurse laid out some vials and we tightened our grip on DR.  He immediately started screaming when he was stuck.  It felt like this moment would never end.

When we were finished the nurse gave him some stickers.  I took him for lunch, emotionally drained.  Instead of taking him to daycare, I took him to a park to run around. After all he had been through that day I could not imagine hurting him even more, but as our journey continues I am learning that this is nothing compared to the pain he could later experience because of an awful reaction.

~Lacey

 

Beach: a fun vacation getaway or food allergy mom’s worse nightmare?

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Going to the beach, spending a day in the sun, waves and the sand, and digging for sea shells is typically a fun time even for those who live there.  My son, DR, loves the sand.  Living in Savannah, Ga, we are 20 minutes from the beautiful beach of Tybee Island.  On family days, we drive down to allow DR the freedom of running through the sand, splashing in the waves, and looking for buried treasure.  One on trip he even found this perfectly preserved dry seahorse.

Unfortunately, one trip to the beach ended all of our fun.  During this last trip he was digging through the sand and came across a mound of peanut shells.  My heart fell into my stomach.  We snatched him up and left immediately.  I have seen hundreds of people eating peanuts at the beach, and never thought anything of it.  But now I realized that it is a very common occurrence to just throw the empty shells on the sand.

Peanuts are a natural product, and the shells will eventually deteriorate over time.  For a while after this beach trip, I assumed that this was not considered littering since it was a natural item; however, the fact that we could not visit the beach because of this  bothered me.  So I recently reached out to the city council of Tybee Island, just suggesting that they post signs asking people to be thoughtful of those with food allergies and not just throw their food items on the ground.  The council’s response was quick and enlightening:  Peanut shells ARE actually considered a form of littering and warrants a ticket if caught.

I did some online-digging of Tybee Island policies, and nowhere did I find anything actually saying this is a form of littering.  The most detailed description of Tybee Island Beach Rules and Regulations* comes from Savannah.com*.  It does list food and fruit peelings as litter items which should make people think of peanuts as trash and litter, but like I pointed out before, even as a mother to a child with a severe peanut allergy I thought it was perfectly common and acceptable to throw empty peanut shells on the beach.

So what needs to be done to correct this false mindset?  I believe Tybee Island City Council is working towards a solution, but I think us moms of children with food allergies need to help.  Not just in this instant, any opportunity that presents itself to be an educator and advocate for the food allergy cause.  If we want to stop living in fear of food allergies, we need to take a stand and put into place policies and structures in our communities to make life safer and fun for everyone.

As I work with Tybee Island City Council toward a solution that benefits all I will post updates.

~Lacey

*Permission granted to link to Savannah.com

The 5 Stages of Food Allergy Grief

Just as with any major change or loss in life, we all go through the stages of grief: denial, anger, bargaining, depression, and acceptance.  The development and discovery of food allergies can be a big blow to any lifestyle and diet.  When we began our adventures with food allergy avoidance, our journey was not smooth, but learning to identify the stage we were in and overcoming the grief was as important as identifying the allergy itself.

Denial: The day we learned of DR’s egg allergy, my stomach dropped.  How could he be allergic to eggs?  I had never heard of this as an allergen.  No one else in our family had this allergy.  He had been eating egg products for months.   He loved cheesy scrambled eggs.  Besides, our pediatrician said his eczema was due to environmental factors like trees, grass, weather, etc.  They only reluctantly referred us to the allergen because they did not believe he had a food allergy.  I was so confused and just could not believe that this was happening to him, to us, to ME!  I loved eggs and could not imagine a world without them.   I was pretty much stuck in the stage for a while.  Even now I find myself sliding back into the denial mindset at times when all I want to do is order an omelet or a waffle.  I am at times tempted to just slip him some benadryl and hand him a cupcake anyway.  Once his reaction begins, though, I know without a doubt that this is real.  This is his life, our life, MY life.

Anger: Once I realize that this is our life, this anger swells up inside.  Why is this happening to my child?  Why is this happening to ME?  What did I do to deserve this?  At times I get trapped in this stage and find myself ranting.  I get angry at the world for not being more understanding, angry at family and friends for not being as angry as I am, angry at myself for not being able to end this.  The anger eats at me, tearing away any resolve I may have had in order to combat the food allergy.  Anger sometimes causes me to make mistakes.  For instance, I was so wrapped up in a comment made by a friend about how much my child inconveniences get-togethers, that I was careless in packing my son’s lunch.  Had it not been for the careful eye of his teachers my child could have eaten a food item he isn’t allowed.  That was a huge wake-up call for me.

Bargaining: As I learn to cope with DR’s food allergies, I find myself slacking at times.  During these periods of time, I am over the amount of time that goes into preparing for meals.  Typically, a grocery store trip takes me 2-3 hours due to having to read all ingredient list several times.  When I’m feeling pressed for time, I sometimes skip reading items I have seen before or getting items that say “May be processed on equipment with peanuts and eggs.”  I got lazy and stopped reading the ingredients of some of DR’s favorite Kroger brand fruit bars.  I figured this was worth the gamble.  It nearly cost us DR.  Within a month’s time the company started using eggs in their bars.  We were lucky his reaction was only hives, but I have since learned that there is no easy way out of this mess.

Depression:  This is probably the most difficult stage for me.  I have tangled with this stage many times.  I catch myself thinking that this may very well be how our lives are forever:  constantly worrying that something will happen, that someone will be careless.  In these moments, I want to hug my son closer, never let him go, and stay locked up at home away from everyone.   This is craziness, I know, but the dangers lurking around every corner are enough to drive anyone to tears.

Acceptance:  This stage has been more difficult for me to grasp. As you will probably learn from other blog posts, I am a fighter and a pusher.  I believe in advocating for anyone who cannot do it for himself.  I work to protect my son by calling ahead to any restaurant, event, or party we may go to in order to see what options are available.  I learned to cook (somewhat) and bake in order to know what he is eating.  I prepare all friends, family, teachers, and sitters for what he needs and what responsibilities they have.  However, the other stages can bog me down, and I forget everything I’ve already learned.  What I have found is that taking care of myself and finding practical strategies to cope will not only help me, but my son as well in the long run.  I recently came across an amazing blog post detailing the Top 4 Tips* for coping with food allergy stress.  These are simple strategies and take very little time or effort.

As with anything else, life with food allergies is fluid and always changing.  Remembering to take care of yourself is important and be the factor you need to turn everything around.

~Lacey

*Permission granted by Emma W. to link to “Feeling Stressed?  Top 4 Tips :)”

 

 

 

Allergy Friendly Homemade Cheezits

image.jpegThese are buttery, soft and chewy with crispy edges. They are zesty cheesy and my five young kiddos absolutely adored them. They are egg free and nut free and can be made gluten free with just a few substitutions. As an allergy mom myself I know we are the QUEENS of substituting and swapping out ingredients! These take 30 minutes total time from start to finish and they will be gone by the end of the day! 😉

So, without anything further, I give you the recipe for:

Allergy Friendly Homemade Cheezits!

2 cups cheddar cheese ( I used mild but sharp or white would also be yummy! )

1 cup of all purpose flour

5 Tbs softened salted butter

1/2 tsp salt ( I use pink Himalayan salt )

1/2 tsp pepper

1/2 tsp onion powder ( optional )

1/2 tsp paprika ( optional )

2 Tbs milk

1/4 tsp of salt to dust the tops before putting into oven

Directions:
Pre-heat oven to 350 degrees.
Line a large cookie sheet with parchment paper or aluminum foil. I used a large cookie sheet plus a small round pan lined with aluminum foil. Use whatever you have. If you use aluminum foil, spray with non-stick spray.

image.jpegNow to start your dough: Add cheese, flour, butter and spices to a food processor and pulse until well blended. Add milk and pulse until a ball of dough forms. Like this:

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Then turn out dough onto a well floured surface and roll out with your rolling pin until 1/8 inch thick. Cut edges with a pizza cutter to form a large rectangle. Put all edges into a pile to the side. Cut large rectangle into 1 inch squares. Mine were more rectangular but I wasn’t striving for perfection 😉 I’m a mom of five…I was striving for get-it-done-super-fast. Now, gently transfer each square onto your lined cookie sheet. Use a thin spatula if needed. After you have all of the squares on your sheet, re-flour your surface and roll out the dough you sat aside. Repeat the process above until all of those squares are also on your baking sheet. Take the dull end of a skewer and poke a hole in the middle of each square. This keeps them from becoming too puffed up. Take a couple pinches of salt and add a very light dusting to the top of the crackers before putting into the pre-heated oven. Bake for about 15 minutes or until edges start becoming brown. Take them out, let them cool and enjoy!!

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I call them rustic 😉 Either way, they taste AMAZING.

~Hope