Open Letter to Food Allergy Parents

food allergy diagnosisThis post has been written for food allergy parents in honor of Food Allergy Awareness Week, which runs from May 12-18, 2013.

To all parents of a child who is newly diagnosed with a severe food allergy:  Right now you are probably feeling nervous, overwhelmed, determined to keep your child safe and somewhat unsure of where to begin.  The very first thing I want you to know is that you are not alone. There are parents out there who feel exactly the same way. There are too many of them, in fact. 

Our son was diagnosed with multiple food allergies and a rare food allergy related disease called Eosinophilic Esophagitis just over seven years ago.  I have been where you are right now.  This whole new world for parents of a newly diagnosed food allergic child can be overwhelming.

Take a breath and know that you have a multitude of resources available to you to help keep your child safe.  Each stage of childhood will present a unique set of challenges so simply take them on one at a time.  And most importantly, rest assured that you will get through this – with education, support and diligence.

As a parent of a toddler and young child you have a great deal of control over your child’s food intake.  At this age one of the challenges will be getting the caregivers on board.  You will need the support of those who also care for your child, whether it be a daycare teacher, a grandparent, a babysitter or all of the above.  The other challenge during the toddler years is that this is the age when kids are learning to share and your son or daughter might not yet understand the implications of eating the wrong food.  You will need to educate your child and feel confident that he or she will be compliant with their restrictions.

As your child enters elementary school you may feel apprehensive that he or she is taking on the world without you.  You should have a plan in place with your child, the lunch room staff, the teacher, the bus driver and the school nurse regarding a potential reaction.  These may be the years when your child longs to have the normalcy of other kids.  It is the time when you will want to ensure that your child knows why it is important to stay on course.  It is also the time that you want to watch who your child befriends.  As you will come to find out, true friends will not feel any burden in helping to keep their friend safe.

As the rebellious preteen and teenage years approach, it will become important to make certain that he or she is always carrying emergency medications on hand.  These are the years when most anaphylactic reactions without immediate medical attention tend to occur.   Taking the time while your child is younger to ensure that he or she truly understands the risk of exposure will be helpful during these years when kids are seeking the freedom of self expression.

Some helpful tips that were shared with me as I navigated this new world were to:

  • Check ingredient labels each time you shop.  It makes the excursions longer but brands often change formulas without notice.
  • Have a prescription for epinephrine in your wallet at all times. This way, if you ever realized that you left without my emergency medications you can head to the nearest pharmacy.  As your child enters the teen years he or she may want to carry a prescription on hand as well.
  • The single most important aspect of managing your child’s food allergies is that your child understands the potential repercussions of exposure. 

Here are some of the most comprehensive, helpful websites whether your child has conventional food allergies, Celiac disease or Eoshinophilic Esophagitis/Gastritis:

In addition to the sites mentioned above, there are tons of websites with allergy-friendly recipes online as well as numerous books available for purchase.

Though it may feel as if that innate sense of nervousness you feel right now will not go away, it will subside a bit as you navigate this new world of food allergies.  Take this time to educate yourself and to formulate a plan of action.  Then just trust in yourself and trust in your child as you move forward together.  Good luck!

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Comments

  1. I grew up with a brother with peanut allergies so I felt very well prepared when my son had a reaction last summer. I was not prepared to learn he also had an egg allergy. Next Fall he is entering preschool, and while I’m confident that he will be fine (and thankfully one of the teachers is a former nurse) there is that little nag in me knowing that there is the possibility that someone might bring in a snack to share that will cause a reaction. Thank you for these great resources/post – it’s calmed me a bit (well, for today at least!).

  2. I had food allergies as a kid and know how tough it can be! Thanks for all the resources.

  3. Fortunately, I don’t need to navigate this world, knock on wood, however, as parent with friends whose kids have allergies, I really appreciate learning about these resources. We also go to a catholic school where there’s less awareness of food allergies which is incredibly frustrating for my friends.

  4. My sons both have a peanut allergy. I bought a pretty cute bracelet for the 4 yo for whenever we go to parties or he goes anywhere new. People notice the bracelet which makes me feel better because although he knows about his allergy, he may still reach for something and be stopped. I just checked Etsy and cant access the shop but will try to comment back later with the link.

  5. That has to be so frustrating that ingredients change over time and you can never just relax when you find a product that you’ve been using! Yikes!

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