Stop and think about what you ate today… Cereal? Oatmeal? Eggs? Protein shake? Sandwich? Soup? Quesadilla? Chips? Yep can’t have any of that…
As many of you know our little nugget has severe, life threatening food allergies. He is allergic to wheat, oats, eggs, dairy and peanuts. His reactions are hives, breathing problems and anaphylaxis. They are brought on through contact with the air, skin and ingestion. We are all learning this new way of life and most people do NOT realize the affects and tolls it takes on a family. I do not post this to get sympathy but to bring this to light. Food allergies are real and affecting more and more people.
I did not misspell fair on accident. FARE stands for Food Allergy Research & Education. Over the last few months I have been doing extensive research and educating myself about food allergies and this is the best source of hope for him and our family. FARE is a non profit organization that works towards advancing a cure and funds the Food Allergy Resource Initiative. Some of the statistics are alarming and the stories of these families are heartbreaking and inspiring.
“How Many People Have Food Allergies?
- Researchers estimate that up to 15 million Americans have food allergies.
- This potentially deadly disease affects 1 in every 13 children (under 18 years of age) in the U.S. That’s roughly two in every classroom.
- The economic cost of children’s food allergies is nearly $25 billion per year.
- While progress has been made, this potentially life-threatening disease has no cure.”
Let that sink in for a minute. That is just astounding to me.
As a new mom I admit being annoyed and rolling my eyes at the new rules at our older son’s school. No homemade treats. NO nut policy. Everything had to be store bought, cut up and washed in the classroom. The extensive rules and guidelines that once inconvenienced me are now at the forefront of my mind as a parent to a child who could die if exposed or ingests trigger foods.
Like many of you growing up I do not remember knowing many people with food allergies. I recall an email my dad sent me before I was a mom. Its something like how did we survive the 70’s and 80’s? We ate white bread, butter, white sugar, water from the hose, bologna and cheese and soda pop. Hey I love me a good butter and sugar sandwich! Martin Lawrence standup! Mama gonna work it out! LOL
“So why are food allergies on the rise?
- According to a study released in 2013 by the Centers for Disease Control and Prevention, food allergies among children increased approximately 50% between 1997 and 2011.
- The number of people who have a food allergy is growing, but there is no clear answer as to why.
- Researchers are trying to discover why food allergies are on the rise in developed countries worldwide, and to learn more about the impact of the disease in developing nations.
As a mother you obviously never want to harm or hurt your child but with food allergies you feel like its your fault. It started early on with my breastmilk. He had terrible eczema, rashes, bloody mucus stools, gas and severe discomfort passing stools. So I changed my diet, no dairy, no nuts! My supply dropped and we started to introduce bottles and supplement with formula. We had gone down this same road with our first son so I was not surprised. We tried all the expensive formulas until some friends told us just go straight to Neocate. Thankfully that worked and he was ok. Once I started introducing him to his first foods was when I new something wasn’t right. He projectile vomited and was lethargic after his first introduction to baby’s first cereal and oatmeal. Call it God’s grace and mother’s intuition but I never gave him any direct dairy, eggs or any nut butter. But it started to get more complicated when he would have reactions to fruit and veggie pouches that contained wheat, oats, milk and others even if there was a trace of the ingredient. It was not until 9 months that we had his blood tested for food allergies. He broke out in hives from eating spaghetti with red sauce.
The results were tough to swallow. Sorry I could NOT resist that pun. The scale is 0-6, 6 being the highest. These are his Allergy Lab Results:
Class 5 very high positive
Class 4 very high positive
Class 3 high positive
Class 2 moderate
Class 1 low positive
Now that we know what he can eat I prepare EVERY SINGLE meal for him and go to the grocery at least twice a week. He is underweight but he is happy. He loves food and being outside. It is a scary thing to be allergic to food and even the world around you.
Food Allergy Reactions & Anaphylaxis
- Every 3 minutes, a food allergy reaction sends someone to the emergency department – that is more than 200,000 emergency department visits per year.
- A reaction to food can range from a mild response (such as an itchy mouth) to anaphylaxis, a severe and potentially deadly reaction.
- The U.S. Centers for Disease Control reported that food allergies result in more than 300,000 ambulatory-care visits a year among children under the age of 18.
In the last 6 months we have taken our sweet boy to the ER twice, once by ambulance. He has been in the Pediatric ICU not to mention countless doctor visits and trips to the allergist.
We went to the fair the night before his first birthday with some friends. We left him in the stroller and did NOT let him out or eat anything new. Our older son LOVED it he rode rides and ate tons of sugar. At 11pm I woke up because I heard something on the monitor. My baby wasn’t crying but he was sitting up. I went in to check on him and he was struggling to breath and gasping for air. When he tried to cry all that came out was a horrible barking cough. Needless to say that is one of the worst sounds a mother can hear.
I immediately called 911. I got out the epipen thinking maybe he had a reaction to something in the air at the fair. Waiting on the fire and ambulance to arrive was the longest 6 minutes of my life. Talking to the dispatcher he suggested to follow our action plan and give him the epipen. Daddy was holding him and when I went to give it to him in a state of shock, panic and fear and it went the wrong way, thru my thumb! Yep I stabbed myself with an epipen! @#$% Screaming from pain, shock and adrenaline I was cussing like a sailor and out of my head.
The paramedics finally arrived and we loaded him into the ambulance in his car seat and administered an albuterol breathing treatment. Walking into the ER I saw the same doctor that had helped us just weeks before. I was so thankful to see a familiar face and someone who knew our history. They monitored him, did x-rays and an epinephrine treatment and after 3 hours they decided he needed to be admitted into the pediatric ICU. As we were taken to our room the clock struck midnight and our baby boy turned one year old.
Watching the nurses taking vials of blood and giving him an IV was one of the saddest moments daddy and I have experienced. He was screaming, crying, coughing, and looking at me to help him and all we could do was cry with him. I held him, slept with him in the crib and never left his side. He was traumatized to say the least. Thankfully we had an amazing team of nurses and doctors and an overflowing amount of love, prayers and support from family, friends and social media. We only had to stay 2 nights and continue his treatment at home. I hardly left his side that week. The doctors said it was not allergy induced but something still told me that the air at the fair and all the food and smoke from the midway had something to do with it. About a month later we would find out that he does in fact have airborne reactions to food.
Babies are resilient, parents are not.
Knowing how to react to a reaction is just the beginning.
We are blessed to have this beautiful child who lights up the world, yet he is cursed with these allergies. I pray for him constantly and for strength to continue to help him lead a healthy and safe life. I wake up several times a night and I am on high alert. Just when you think you have got it down, he has another reaction and it is so hard to watch. We cannot take him to certain restaurants anymore for fear of a reaction. So NO Starbucks, Mexican, hibachi, ice cream, or anyplace that has a smelly or steamy environment. And because it is mean to eat all the foods he cannot have in front of him. When we do go to a restaurant I alway bring his food with us. I think next time I will ask the waitress bring it out to him when our meal comes out so that he feels included. We choose not to send him to school, daycare or MOD because I am not ready to trust anyone.
People may say these are extreme measures and they are. Once you witness your child in distress, struggle to breath, stab them with an epipen, ride in an ambulance, and help 4 nurses hold him down and watch them stick his little body over and over with needles, kicking, screaming, crying and looking deep into your eyes saying “help me Mommy,” you take extreme measures and DO NOT apologize for it.
With these struggles comes great triumph. Some days I feel so exhausted and my nerves are shot, but I know that I am a strong, bad ass mom because I can deal with this despite how f-ing hard it is. God has been testing me in different ways to prepare me for this part of my journey. I will not fail Him or my family but these changes are rocking my world. I go back and forth with “everything is going to be ok” and then other days I don’t think it will. My baby doesn’t know he is missing out. He doesn’t realize that he is different. But I do. I am sensitive for him. The simple things we all take for granted. I want him to be able to have a piece of pizza at a sleepover or a cupcake at at birthday party.
We are all having to learn a new life to protect him. We will stop at nothing to protect the ones we love. People say oh well he will grow out of them. Well maybe yes and maybe no. It is not like we will get an email someday saying he is no longer allergic to certain foods. We will have to continue on and challenge him as he gets older. Everyone says they want a healthy child and I know how important health is and how we take it for granted. No my child does not have cancer but the world around him can kill him. We have to educate people and bring awareness to the epidemic that is food allergies.
I challenge anyone to try and eat like our son. It sucks! It is so hard, frustrating and expensive! Eat dairy free, gluten free, egg free & nut free for one day. See if you can do it.
“You never really understand a person until you consider things from his point of view… Until you climb inside of his skin and walk around in it.”
― Harper Lee, To Kill a Mockingbird
Thank you so much to our family and friends. Thank you to other allergy moms who have listened to me cry and given me hope. Finally I must thank the Lord for everything He has given us. Even though I do not understand the path I have to trust Him and remain Just Happy Mommy.
Images from: Some Ecards Pinterest and FARE