Food Allergy Advice for the Newly Minted Food Allergy Parent

When your child is newly diagnosed with a food allergy, you’re bombarded with information on what to do about the allergen at the same time as dealing with the post-traumatic stress from watching your child burst into hives or, worse, experience anaphylaxis. Tests (scratch and/or blood) will be done to confirm the allergy. Your pediatrician and allergist will help you develop an allergy action plan and hand you a prescription for epinephrine. With papers and prescription in hand, off you’ll go into the world as a new food allergy parent. You’ll go out into the world armed with information and then you’ll stop and a zillion questions will pop into your head. And you know what?

It’s okay not to know… for now.

If a food allergy parents claims that they didn’t have any questions or worries when leaving that initial allergy appointment, then they’ve either been through it before or they’re lying.

How do I know which food have the allergen as an ingredient?

Read labels. You’ll become very, very, very good at this. Here in Canada, the most common food allergens — priority allergens — must be declared on the label. This is why you’ll sometimes see stories in the media about a product being recalled for undeclared allergens such as egg or milk. If you have questions about the label, call or email the company. Most companies are very good about answering all your allergy concerns.

ALWAYS READ LABELS!!

Part A of this is — Even if you discover a “tried and true” safe product, you can’t always consider it safe because it was before. Companies will even direct you to always read the label as they may change the ingredients for their product.

Part B — Don’t assume that a product is allergen free because it doesn’t seem like something that would have the allergen. You’ll be really surprised where allergens such as egg or milk or mustard will pop up.

People know my child has a food allergy so will be careful about food allergen cross contamination, right?

Wrong! This isn’t always the case. Many people don’t understand food allergens and this is even more apparent when it comes to cross contamination. I’m sure you’ve already experienced how easy it is to cross contaminate in your own kitchen when you understand allergies. You’ll be surprised how many think that a good wipe or simply scraping the allergen containing food off the plate will make it okay for your allergic child to continue eating. You’ll be constantly reminding people at family events about things such how hands need to be washed, utensils can’t be reused, and how dropping food on the floor around a food allergic toddler is extremely dangerous.

It’s okay to be worried about going to group events because of the allergen risk.

At first, you may be terrified of any group event. All you’ll think about is REACTION! Then you’ll gradually find yourself becoming more and more comfortable. You’ll discover that you’ll always be your child’s best advocate but you will find people with whom you’ll feel at ease and have fewer worries. Though the hyper awareness of allergens will never go away, you will get used to it and group settings will become easier. Be open when playgroups about your child’s allergies. You’ll quickly discover how safe the environment will be for your child or if any accommodations can be made. For example, you may be able to bring a safe for your child while the play group serves a different snack to the rest of the children. Be open about the allergy. Acknowledge your worries, let yourself be worried but don’t use it as an excuse to stay isolated. There has recently been more awareness brought forward about food allergies through organisations such as Sweet Caroline Foundation. Parents are slowly becoming more aware.

Talk to the health professionals.

If you’re worried about the allergy, discuss it with your pediatrician or allergist. If you’re worried about testing, talk to them. There’s nothing wrong with asking questions about a test to be done and wanting more information on it. Often times, we let the doctors just go ahead with their plan and this can cause greater anxiety about certain tests or procedures.

Allergies are every changing.

Allergies can be outgrown and we celebrate when this happens. What they tend to not talk about is that new allergies can also appear out of no where. Think you’re in the clear because your child has eaten salmon for the past year with no reaction? Chances are, yes. However, don’t dismiss any signs of a reaction just because the food up to now has been tolerated. Unfortunately, it does happen!

Find your people.

Reach out and find others who are going through the same journey that you are on. There are great groups in the community and on Facebook (such as Food Allergy Moms or Parents of Children with Multiple Food Allergies) with many who have been in your shoes. You’ll need this as you hit milestones that bring about greater challenges. Daycare, elementary school, teen age years all come with new challenges for the parents and for the food-allergic child. Your food allergic community will have sage advice as you strive to figure out what to do and can also help your food allergic child feel not so alone. They truly get, for example, birthday party anxiety.

What’s one thing I really wish that someone had told me?

Anxiety can be triggered post-reaction especially in cases of anaphylaxis, presenting in children as avoidance behaviours (avoiding food or social settings). We went through 6 months of doctors and dietitians telling us that it wasn’t normal for our child to reject food after two anaphylactic reactions within three weeks.

What I know now? Post-reaction anxiety DOES happen for both the child and parent.For some, the reaction could lead to post-traumatic stress disorder symptoms for the child or parent. You can learn more about this by talking to health care professionals. I’m not one but experienced this so can only say that it does happen. If the professional you consulted can’t/won’t help, talk to another. If you’re worried, they should be worried. Anxiety and PTSD from food allergy reactions are conditions I wish that I had been more aware of when we started this journey.

I wish that I could say that the food allergy journey is easy… it’s not. While it does come with issues and anxiety, it does force you to become more aware of the food that you eat and you quickly learn the value of home cooking/baking. Arm yourself with information and surround yourself with your people because this will be a bumpy ride.