This blog entry is about informing people what it is like for Joshua, a young child with a food allergy. I will not include this entry for Joshua to see one day. I have found that very few people know about what it is like to have a severe, life-threatening food allergy. This is my attempt to give you a little feel for it, and maybe even teach you something or help you to understand what life is like for Joshua. I want to say that I am very proud of Joshua and how he handles his food allergies. He seems to understand what can happen if he comes in contact with one of his allergens. He is also great about always asking mom and dad to check foods or snacks for him. I can even imagine that some day Joshua (and I) will be an advocate for other children with food allergies. Thanks for taking the time to read.
Dear Friends of Joshua,
Most people who know us well, know that Joshua is allergic to peanuts, nuts, eggs, shrimp, milk, and soy as well as cats, dogs, and several environmental allergies; however, many people may not realize that food allergies are associated with eczema and asthma, too. Joshua has both eczema and asthma along with the food allergies. Thankfully, Luke has zero allergies and only asthma to live with. We are on the telephone with the allergists at Children's Hospital about every other week. Both boys are on regular asthma maintenance medicine (daily Zyrtec and
Nasonex) as well as occasional oral steroids.
Here are some of the things about our daily life:
EVERY time that we grocery shop, we must check labels for the allergens as well as anything that has been manufactured in a facility that has these allergens it. Research has found that 30% of the time these allergens have been found in the product even though the product did not contain the actual ingredient. We have also found that one time a product is safe, and the next time it is not so labels must be checked every time.
EVERYWHERE that Joshua goes, the rescue kit must follow. The rescue kit contains the emergency action plan for Joshua, an
epi-pen, and
Benedryl. If we forget to take it with us, we go back for it every time – no exceptions. We have also ruined many
epipens by leaving them in the car. Extreme temperatures can ruin them, and we certainly won’t take a chance of not having the best medicine for him.
EVERY time we go somewhere, we have to be aware that the rest of the world eats these foods. What about the child who just went down the slide at the park? Or the child that was in the cart before Joshua at Target? What if the child just ate a peanut butter sandwich?
EVERY time we choose to eat outside the home, we must consider the restaurants. Any restaurant that had any of the food allergens on the menu can pose a risk of cross contamination for Joshua. That leaves a few places to eat out. Thank goodness McDonald’s is relatively safe for him! While they offer nuts as a topping for their ice cream… the nuts come in individual packages that should be OK.
EVERY school day is a reminder for Joshua that we must be diligent with keeping him safe. Each day at school, Joshua must bring his own food and snacks from home while the other children eat the school lunch. When birthdays are celebrated at school, Joshua must eat a different treat because the cupcakes from the store or bakery may not be safe. Each time, Joshua is invited to a birthday party (and he is quite a social boy!), I must talk to the parents or call the party place ahead of time to discuss the food situation. He has had to take his own treat every time there has been a party. Joshua’s teacher has been fabulous working with us this year! She wears a fanny pack every day, and another
epipen is kept in the school office just in case. Several staff members have been trained on how to use the
epipen.
EVERY week when Joshua attends the Atrium, a Montessori-based catholic curriculum program, Eric or I must stay there while Joshua attends the class. The teachers are wonderful, but they have been honest in telling me that they do not feel comfortable keeping the
epipen for Joshua. Every other parent drops off their child, and comes back an hour and a half later, but I have become a helper in the class most weeks because I am there anyway. (I do enjoy it though!) And imagine what it is like getting a babysitter. We hardly ever go out as a couple (and that's OK. There will be a day!) .Part of the reason is my reluctance to have a high school student watch our boys. I usually want someone older and more mature. Every sitter must be trained on using the
epipen. And some have chosen just not to babysit because of the concern with possibly using the
epipen.
EVERY time Joshua joins a group (and again he is VERY social little guy), we have to tell the coach, teacher, etc. about Joshua’s allergy, Most of the time, food is involved in these activities. When Joshua goes to Children’s Word each time at mass, I have him wear his “I Have a Peanut Allergy” pin” to inform others of his allergies. Any time Joshua is not with Eric or me, he must be protected the best we can.
As you can see, there is not a moment in time that we are not thinking about Joshua’s safety with food. We know that we can not control everything in the environment, but we give 100% every day to keeping Joshua safe. We do not expect that others will be as vigilant with this as we are. But please understand why it is difficult when you offer a cookie, candy bar, or something else to Joshua. We know that you probably do not realize that food is not the only way to come in contact with an allergen, but hand lotions and other products can contain “nut” items. Please understand that I do not want to eat peanuts, nuts, or any other food allergens myself. Please understand that we are extra cautious about the boys getting sick when we go into hospitals or places where there might be sick people. What may seem like a simple common cold, can mean a full blown asthma attack for either of the boys. A simple cough triggers the emergency action plan and usually more medication so that we can prevent a severe asthma attack. And not to mention, the risk of
anaphylactic shock increases when children have asthmatic symptoms.
Speaking of
anaphylactic shock.....please check out this link:
http://www.doctoroz.com/videos/warning-signs-food-allergiesIt only takes about five minutes and will demonstrate to you what
anaphylactic shock is like. Thank you for watching this for Joshua's sake, but it might even save a life of a loved one someday.
Finally, I have heard from disturbing things from some very educated people near and dear to me .....Things like, "I think kids today just need to toughen up." (speaking about kids with food allergies). "Some parents just go overboard with food allergies." I had a friend who was allergic to peanuts and she would just itch when she came into contact with peanuts." "Some kids peanut allergies are not that bad......." Even at school I have heard parents say, “Why should my kid have to suffer and not eat peanut butter just because of this kid with allergies?”
Well, folks here are the facts:
** 1 in 5 children will out grow a peanut allergy, and fewer will outgrow allergies to nuts or shrimp. (American Academy of Pediatrics)
** Strict avoidance of the allergy-causing food is the only way to avoid a reaction. Reading ingredient labels for all foods is the key to avoiding a reaction. If a product
doesn’t have a label, individuals with a food allergy should not eat that food. And yes, this includes foods that have been manufactured in a facility that also manufactures peanuts, nuts, etc. It includes some hand lotions, lipsticks, some stuffed animals, etc.
** 16 - 18% of kids with food allergies have reactions at school.
** Food allergies cause approximately 150 - 200 deaths per year.
** Fatal food
anaphylaxis most often occurs with peanuts, then nuts. As many as one-third of peanut-sensitive patients have severe reactions, such as fatal and near-fatal
anaphylaxis.
** There is medical documentation that these food allergens can be airborne, and cause a severe reaction with even the smallest bit of exposure (a whiff, a kiss from someone who has eaten peanuts or nuts, etc.)
**Less than 20% of people with peanut allergies will outgrow it. The chance of outgrowing it is even smaller for children with multiple allergies and asthma (Joshua has both.)
So yes...food allergies affects our family and is part of our family every day. Joshua has gone through so many stages already from, "Why did Jesus make me this way?" to saying, "It's OK," when someone offers him a piece of candy or food that we do not know enough about to know if it is safe.
Luke is even supportive and
on board with all of our efforts! This week Luke brought home candy from his valentine party at school. He asked me to check the labels because he did not want to eat peanuts. He asked me to trade in his candy for something peanut-free. His exact words were, "I am not ever going to eat peanuts!" I know that our challenges will change as Joshua gets older, but with a lot of prayer and faith, we will get through this and get through it well!
I could go on and on here, but instead I am going to say thank you to those of you who took the time to read all of this. Thank you for being so supportive, and caring about what is happening in Joshua's life. I know that this experience has made our family stronger and we will continue to work together to keep Joshua safe. Please join us in praying for a cure for food allergies or a better way to manage it. Just tonight we had a conversation about a food allergy study being done at Children's Memorial in Chicago. Researchers are studying the genetic and environmental causes of food allergy. As we discussed tonight, he will have to have the skin prick test done again and have blood drawn. He said he did not mind doing it if it helped doctors find a way to help other kids with food allergies. All I can say is that he is very brave because I know that having blood drawn and the skin prick test is a big deal for anyone, but especially for a four year old. I am so proud of him, and we will be participating in the study in April!
