Thursday, May 8, 2014

Have a Child on a Special Diet? What I Wish I Had Known Years Ago

Tips for Raising Happy Healthy Kids with Food Allergies - Photo by Southern Foodways Alliance
Whether a child has food allergies and/or sensitivities or perhaps a physical or mental condition that requires a special diet, parents often face many tough decisions and dilemmas as they begin to search for what works. The diagnosis might have been made quickly or perhaps the process is taking years, with many puzzle pieces still lying on the side because they do not quite fit at the moment. Regardless of the situation, I wish you the best as you travel down this often bumpy, curvy, uncomfortable, frustrating, and perhaps even scary at times road. Hang in there!

With three children who have multiple allergies and food sensitivities, I can honestly say I have probably run through every possible emotion related to special diet issues. It is a continuous process that may need tweaking multiple times, but hopefully you will find a new normal that will become the comfort zone.

Here are a few of the lessons I learned that I would like to share in the hopes of helping someone else.

#1 Examine a variety of ways to educate yourself

I remember reading a letter to an editor in a magazine in which a woman mentioned that her child had allergies to about five different foods. At the time I thought that mother must have been overly protective and that nobody could really be allergic to all that stuff. I am now humbled to be in a similar situation with my children. I have begun to gain a whole new appreciation for the complexities of special diets, but I also try to remember my thoughts before it hit home with me. When someone is rude or hurtful, I try to remind myself that I did not "get" it years ago either.

When I was in a 4-year nursing school program, we had a total of one paragraph that mentioned food allergies. That paragraph included one or two sentences on celiac disease. Frankly, I didn't give it much thought because I figured this might be something I would rarely see in clinical practice. I was wrong. The incidence of reports of food allergies in children has risen 18% from 1997 to 2007, affecting about 1/25 children (4%) with numbers rising. These children also tend to have a significantly higher incidence of asthma and other allergies.

I had a lot to learn and am still learning years later. Once we began to suspect food as a culprit, the physician had very little specific information for us, so he referred me to a nutritionist. Each idea I tried as a result of that meeting was a total disaster. Although mainstream healthcare professionals are more educated now than they were years ago, they may not have all the answers. Children who have one food allergy or sensitivity may have or develop additional allergies and sensitivities. What worked one month may need more tweaking in future weeks.

I have found it very helpful to communicate with other people who are experiencing similar diet-related issues. They are often willing to share what has worked and failed for them, along with helpful, specific suggestions. Books, magazines, web sites, and cookbooks with a focus on special diets may provide a wealth of useful information. Some of that information may be helpful and timely. Glean what you can. A lot of knowledge comes through trial and unfortunately a lot of error.

Food labels are improving, but they have a long way to go. Although the top eight food allergies are identified, many of us must engage in time-consuming research just to determine whether or not an item is safe for our children. I have been known to call manufacturers in the grocery store while shopping for ingredients if their labels are not clearly marked. Unfortunately, some manufacturers do not provide an immediate answer or have phone trees that are so branched that you might feel comatose before you ever manage to get connected with someone who knows the answers to your questions.

Educating your child regarding his special needs and encouraging him to help with food preparation can empower him to advocate for himself if needed and to help him hone life skills for the future. Many people learn best by actively participating. Learning about how to find safe foods is an important skill to learn.

#2 Share your knowledge with others

Arm yourself with a list of what the child can and cannot eat and a specific plan for ensuring that she is safe. Creating a computer document can be very helpful if changes need to be made. Ensure that those caring for your child, including teachers, daycare workers, those who work in before/after school programs, gym childcare, religious child programs, etc. are educated about any special needs related to the diet and have a clear plan in place.

Ensure that this information is properly communicated to those who need to know. If you would like to be notified ahead of time if special food will be served at a school party, for example, discuss how to alert other parents of the need to give prior notification before bringing in food. Have a clear plan A and a plan B if the original plan is not followed. Don't be shocked if neither plan A nor plan B is followed in your absence, but be prepared to calmly and professionally educate those special needs again if necessary. You may find it helpful to develop a 504 plan, if appropriate, if your child is school-aged.

Verbalize your needs – very few people are adept at reading minds accurately. Your children will learn how to verbalize their needs by watching you in those early years.

#3 Explore various ways to find specialty foods

After arming myself with a wealth of information about special ingredients and recipes, I felt much more sure of myself...until I realized that few to none of our local grocers actually carried those ingredients. I had never even heard of Whole Foods or Trader Joe's at that time. The internet does make searching for hard-to-find ingredients much easier. Some people order specialty food online. A few small grocers may be willing to special order a case at a time, and you might look to local farmers who sell foods that are safe for your child. Having a network of friends who need the same items might be particularly helpful if you can split the cost of a case.

It helps to plan ahead and keep the specialty staples on hand at all times in the event that you need to make something at a moment's notice. Consider storing those extra quantities in airtight containers, and rotate them out to ensure that your ingredients are fresh. Having a ready supply of specialty foods, cooking supplies, necessary medications, and a backup power supply in one specific location can be a huge help in the case of a natural disaster in which you need to evacuate your home unexpectedly. Many emergency relief organizations may not have specialty ingredients and allergy-friendly foods immediately available, making a stressful situation even more stressful.

#4 Be prepared to have increased expenses

One might think if you leave out an ingredient that a food item would cost less...but that is usually not the case when purchasing specialty food items. Sometimes it seems as though for everything left out of an item, you could just add another dollar to the price. If you do not have to purchase specialty foods, this might be a reason to stand up and rejoice! If you have to make those high-priced purchases, I feel your pain.

The increased price of food is only a part of the added expenses. Add to that physician visits, special medical equipment and medications, special camps, extra time off work, the possibility of a career change or relocation due to medical needs of the child, and the expenses can skyrocket. According to some sources, the average cost related to food allergy is over $4,000. Keep in mind that children are priceless. You may need to repeat that to yourself in the check-out line.

#5 Love and encourage your child

Although discovering food allergies and sensitivities and making appropriate adjustments may be a huge turning point toward a healthier and happier way of life, not everyone else will embrace those changes. It helps to have a thick skin, to find healthy ways to vent, and to recognize each child's special qualities, strengths, and interests while encouraging each child to enjoy life and to interact well with others. Avoid the tendency to shower the child with special needs with loads of attention at the expense of siblings who may feel less loved and appreciated. Nobody said being a parent is easy.

As others become aware of the special diet, prepare yourself for a wide variety of reactions, from the caregiver who decides to sneak food to your toddler to the person who gives you a big hug and asks what she can do to help when she sees you are having a bad day. You and your kids might have to deal with bullying or you may discover that kind friend who wants to purchase something special that your child can actually eat for the Valentine's Day exchange. You might encounter those who say something like "Oh...so you are STILL doing that weird diet thing?" or remarks that maybe you didn't let your kids play in the dirt enough to a friend who comes to you asking for advice about her own child who seems to be experiencing food-related sensitivities. Ironically some of those people may be the same person as he or she begins to learn more about those special health concerns in a more personal way.

#6 Find the blessing in the situation

Every situation is different. Some children may outgrow allergies or medical conditions while others may experience years of tests, treatments, and special needs. Changing one's lifestyle just might have some unexpected good qualities, even if the good in the situation is hard to recognize. I have gained more empathy and have learned to communicate more effectively in the hopes that my kids will learn to stand up for themselves with grace and professionalism.

If you are traveling the road of a special diet in the family, don't give up! Keep evaluating what works and what does not work and continue to move forward. Hang in there – you are not alone. Be patient. Be kind. Find what works and continue moving in a positive direction!

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