Tips for Managing FPIES at School/Daycare
My child is diagnosed with FPIES and is school-aged. I am worried about his/her safety at school.
It is natural to worry about your FPIES child in a school or daycare environment. The everyday worries at home can be overwhelming enough. Below are a few tips that can help you and your child's school and keep your child safe while still enjoying and participating in school.
1. Explore a few school options
When approaching the school years, visit a few different schools. Evaluate the environment: is it large, small, orderly, neat? What is the overall hygiene of the classroom? Ask the school about their policies for children with medical issues, especially food allergies. FPIES should be handled with the same level of care and concern as other conditions such as diabetes or a hearing impairment. Observe whether the staff is eager to learn and listen or not. Do they take notes? Do they ask questions about YOUR child? Are they willing to learn? Are they rushing you? Do they have a plan in place for handling food allergies? Ask to speak with another parent who has a child with a food allergy to discuss their satisfaction with the school and its staff, or ask other parents in the school their general level of satisfaction. You will most likely have a “good feeling” when you have found the right school for your child.
2. After choosing your child's school, request a meeting with his/her teachers as well as the school administrators
Request an hour of the school’s time and ask that your child’s teachers and administrators be present. First, discuss your concerns about your child’s transition into school. Ask how the school accommodates and eases new children into their setting. Then, briefly discuss your child’s medical history. Explain FPIES to them in simple terms. You may even want to provide them with printed copies of the “About FPIES” section on the IAFFPE website written by our Medical Advisory Board. Take the time to educate the school, knowing that they most likely have never had another child with FPIES in their school. Work WITH them. Next, demonstrate how to make your child’s formula, Nutra or meals. Ask the teachers to then make it on their own so that you feel comfortable. Ask to keep a few cans of formula, Nutra, etc. at the child’s school, just in case.
Provide a copy of the ER letter provided on this site or by your physician. Discuss emergency protocol in detail and also provide in writing. For example, if your child accidentally ingests a food, ask that they call you first. If the child goes into shock, discuss calling 911 first and then calling you. Be sure to review each type of reaction; vomiting, diarrhea and shock. If your child also has IgE allergies, explain when to use Benadryl or to administer an Epi-Pen and/or call 911. Remember to explain that FPIES is not a disease, it is an induced disorder; it is not contagious.
Also provide the school with a photocopied picture of your child with a list of their “safe” and “trigger” foods listed below the picture. Ask that this be placed in the classroom at all times, should any staff members be absent and a substitute be present. If your child has allergies to playdough, etc., provide the school with safe alternatives such as homemade playdough or safe pencils or markers. Ask that when your child eats, that he or she be seated in a smaller group and that he or she be taught not to share food in the school setting.
3. Follow up and maintain open communication with the school
Ask if you may observe the classroom (this is more of an option for pre-school and kindergarten-aged students). Stop in and ask the staff if there is anything they need from you to ease their worries and have an open line of communication throughout the school year. Ask to be a classmom/dad for your child’s class. This will keep you informed and able to participate in the holiday planning.
If your child is doing a food trial, communicate this to his/her teachers. If he or she fails the food, inform the staff and update your child’s posted food list. When your child returns to school, explain to the staff that they may see some behavioral changes in your child and how you would like them to be addressed. The most important thing you can do is to develop a reciprocal, open relationship with your child’s educators.
Can my younger/older FPIES child attend school safely?
Yes, many FPIES children attend school safely and are able to participate in most activities. Always and diligently educate your child as to what is a “safe” or “dangerous” food. Encourage open dialogue and communication with your child so that he or she is equipped to deal with being around foods that he or she cannot eat. This tip will help you in any setting. Provide your child with emotional support when he or she wants a food that he or she cannot eat. Provide your child with alternative options to ease the emotional hardships but be careful not to overindulge. If your child is teased in the school setting, discuss this immediately with school administrators so that it may be addressed promptly. Most schools have a “zero tolerance” policy for bullying.
Some creative modification on your part can also be helpful. For example, during holidays and parties, provide a safe snack for your child and/or other children, such as shaved ice and pureed berries, or foodless activities or gifts. You can become quite creative with this and often non-FPIES children will look forward to the “treats” you and your child provide their classroom. (As an example, see our “recipe” for a Foodless Cake for a fun new twist on a traditional cake.) For parties in a school setting, request that your child not be secluded, but rather informed and prepared. Ask your child’s teacher what you can provide to maintain a safe and enjoyable environment for your child. See our “Recipe” and “Holiday Tip” sections for more creative ideas.
What do I do if my child is older and still has FPIES?
Food allergies fall under the umbrella of “Hidden Disabilities,” which entitles a child to a 504 plan. Cited from About.com, a 504 plan “refers to Section 504 of the Rehabilitation Act and the American Disabilities Act which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. “Disability” in this context refers to a “physical or mental impairment which substantially limits one or more major life activities.” This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, a peanut-free lunch environment, home instruction, or a tape recorder.
A child may receive a 504 plan by means of their pediatrician or physician. Each state has different requirements so careful examination of your state’s regulations is necessary.
