By Kathy Franklin
The diagnosis is the bad news. I was frightened and overwhelmed when we first learned that my son had life-threatening allergies to nuts and eggs. It was horrifying to think that a well-meaning acquaintance might hand him a cookie that could kill him, and that a careless taste, or even touch, of the wrong food could send him into anaphylaxis.
The good news is that you can handle this, and your child can handle this. It’s hard work, but manageable. Remember when you first learned to drive? It seemed impossible to remember all the details, and the consequences of making a mistake were potentially life threatening. (It must have been pretty terrifying for your parents, too.) But it got easier, and soon you were an expert driver. This is the same kind of learning. You’ll get really good at it really quickly. You’ll always have to be careful, every time you drive and every time you eat, but it becomes second nature.
Read Ingredients Carefully We are incredibly lucky to have comprehensive food labeling laws in most countries. The information is all right there for you. If you don’t understand something, skip that food. If you’re not sure it’s safe, skip that food, too. The Food Allergy & Anaphylaxis Network has “How to Read a Label” information with all the wording to avoid for each allergen. Hugely helpful. The whole site is wonderful, but here’s the direct link to the specific ingredients to avoid for milk, soy, peanut, wheat, shellfish, egg or tree nuts.
Always Carry Your EpiPen and Liquid Antihistamine Make sure you have a system for remembering to keep the medicine with your child at all times. Some families leave the medicine kit at the front door as a reminder. Keep a spare set at home, another at school, to be certain your child is always covered. Don’t leave a set in the car – it gets too cold and too hot in there; the recommended storage temperature for epinephrine is from 59 to 86 degrees. It’s not a problem to have the meds outside in very hot or very cold temperatures for a couple of hours, but if you’re spending all day at the beach, a bit of shade for them is a good idea. And if you have the fortitude to play in the snow for many hours, some insulation for the medicine might be wise.
Present the Solution Along With the Problem I think this is crucially important for your child’s mental and physical well-being. Don’t say, “OMG, you can’t eat this and that, and now we have to be really careful, or else you’ll get very sick.” Instead, say to him, and to yourself, “You can’t eat this and that, and therefore we have to carefully check ingredients, and always have the medicine close by, so you’ll get better right away in case you get sick.” I can only imagine how many parents, upon receiving any number of life-threatening diagnoses, wish there were a magic antidote. Well, this is our magic antidote. People who receive epinephrine promptly for an allergic reaction, and follow-up with medical attention, recover quickly. It’s when the Epi isn’t available, or isn’t used, that tragedies occur.
I’m not saying that my child, or yours, will die if we don’t use the EpiPen right away. I’m saying he could potentially die. It’s difficult for even the most expert doctors to predict how severe a particular allergic reaction will be. We do not, obviously, want to wait and see just how severe the reaction will be, which is why we’re prescribed epinephrine shots and why we need to use them as prescribed. Until there’s a cure, this is the treatment, and it works.
Practice Using the EpiPen or Twinject Practice, practice, practice. Both the EpiPen and Twinject two-packs come with a sample training device. Familiarize yourself, and everyone who cares for your child, with how to use it. Don’t wait for an emergency to read the instructions. You’ll be relieved when you see how easy it is to administer.
Put Up a Sign I used to have a large, colorful sign on my fridge, spelling out Max’s food allergies. It said something like, “Important Medical Notice – Max is severely allergic to eggs, nuts, and sesame seeds. He cannot eat or touch any of these foods, or anything containing even a small amount of these foods. Please do not bring any foods with eggs, nuts or sesame seeds into our home. If you have recently eaten or touched any of these foods, please wash your hands. Thank you!” It served as both a reminder and an educational tool for visitors, friends, and babysitters. We had a similar sign at the snack prep area in his kindergarten classroom, spelling out what he could and couldn’t eat, what foods to watch out for, and emergency numbers and emergency protocols in case of a reaction. Occasionally parents of his classmates would ask me questions about his allergies, after reading the sign. It was a useful way of educating people, and a good starting point for discussions about his special food needs.
Join a Support Group There are hundreds of food allergy support groups around the country. You can check the FAAN or FAI websites for some leads. You can learn a lot from parents who have already gone through this. It’s also very comforting to be in a room with people who understand how you feel when faced with challenges like 3 birthday parties next week, or a class field trip, or a non-supportive family member. Groups either run by, or advised and attended by, an allergist are best, to clear up any medical misinformation; not all the medical information provided on the Internet, or by fellow parents, is sound, so it pays to have a specialist in the room. If you or another parent in your circle has an allergist you can trust, try to persuade him or her to give up an hour or two a month. I’ll bet it will be a boon to the doctor’s practice, as well as a valuable learning experience for all involved – including the doctor.
Relax Force yourself to relax, at least when you’re with your child. You want to model thoughtful, careful behavior when making food choices, not anxious behavior. Be as matter-of-fact and as good-natured as you can about these new restrictions in her life. This is hardly the only danger our children face. We don’t freak out (too much) about the possibility of our child being hit by a car, for example. We simply teach them, and remind them, to look both ways before they cross the street, and we hold their hand tightly until we’re positive they will be careful enough to manage without hand holding. We take it very seriously, but we don’t stay up nights worrying about it.
We welcome any questions you may have, whether or not you’re new to food allergies. Please write your questions or comments in the space provided below and we’ll do our best to answer them.
Button by zazzle