Children Living with EGIDs

Resources
Celebrating the Holidays, courtesy of Kids With Food Allergies
Guide to Celebrating Without Food.pdf
IEP/504 Plans.pdf
Do you need an IEP or 504 plan?
Post-Secondary School.pdf
Student Health Forms.pdf
Health_Info_Sheet_Patient.pdf
Guide for Students with Chronic Illness.pdf
No-food Birthday cakes.pdf

The challenges Children with EGID face depends on the severity of illness, treatment, and dietary restrictions. Some children with eosinophilic esophagitis do well with elimination of a few foods from their diet; others can only eat a few foods.  Some children may be treated with swallowed steroids without dietary elimination.  Staying involved in your child’s school is important in helping him/her succeed. 

Tips for restricted diets at school

• Communicate your child’s needs with school officials and teachers at the beginning of the school year
• Ask for a calendar of food-related school events
• Volunteer to organize holiday celebrations and bring crafts instead of food
• Plan ahead when possible to ‘match’ food served at birthday parties and snack time with a ‘safe version.
• Teach your child their “Safe foods”. Keep a list to give to others.
• Be sure your child has a stash of ‘safe’ foods or stickers in the classroom for unexpected parties.
• Remind your child to only accept ‘safe’ foods from a known source (parent, guardian).
• Involve your child early in the process. Your child will need to be able to manage his/her illness independently one day. Start early: Have your child observe you interact with school officials and parents in a positive and productive way.
• Share our “Guide to Celebrating without food” with your child’s teacher

Other, more severely affected children, face the additional challenge of managing chronic illness while in school. Missed school days, holidays parties, feeding pumps and the feeling of isolation complicate what should otherwise be a care-free childhood. Children often reflect parental attitude about their illness and limitations. Readjusting attitude towards food is a very important first step. Food is simply nutrition, whether formula through a tube or a severely restricted diet.

Some suggestions to help your child adjust:
• Focus on what your child CAN do.
• Encourage your child to pursue non-food related interests and hobbies.
• Stay involved in your child’s school.  Participate in planning holiday celebrations.
• Plan creative fun birthday parties.

The Younger Child: Useful Advice People Have Given Me on Coping with a Child with Chronic Health Issues

By Kamala London, parent

When my son was diagnosed with EoE at age 14 months, my journey of learning about and coping with EoE began. First, I will mention that, at times, I have really struggled with my son’s health issues (such as failure to thrive, multiple food trial failures, eventual formula-only diet, repeated failed biopies). People react very differently when confronted with adversity. Some people immediately stand up to the challenge, ready to fight. For all of us, though, learning that your child may have chronic health issues requires adjustment to a way of life you weren’t expecting. Each new milestone (e.g., birthday parties, starting preschool with shared food) required me to yet again face the challenges and sometimes pain of dealing with EoE. Fortunately for us, my son (now age 5) is doing wonderfully with his current treatment, and I think I’ve also begun to cope much better with the disorder.

I have had a sizeable number of people, sometimes strangers, make insensitive (and let’s just say “unhelpful”) comments along the way (e.g., “Wow, your 2-year-old is the size of my 6-month-old”; “Isn’t your 3-year-old a little too old for a bottle” and so on). However a few people have given me advice that has helped me cope with the challenges of having a child with an EGID. I am writing this column because I’d like to share some of it with you.

1. Things will get better.

During the walk for Eos Disorders at the 2007 Salt Lake City APFED conference, I was asking one of the APFED officers how her son handled going to school and eating only one food. She told me she has asked her son that question, and he said he is too busy talking to be bothered by it. She also told me “Things will get better.” (The way things had been going for us, I really didn’t believe her. But they have!)

2. Let your son decide on when you should be stressed and worried.

Also in 2007, I was talking to a 21 year old with Maple Syrup Urine Disorder (a genetic disorder somewhat similar to PKU, where her body can not metabolize protein who was reliant mostly on a formula for nutrition). I expressed to her how upset and worried I constantly was over my son and whether he will be able to eat food some day. I was impressed with how mature this young woman was- she reminded me that it was my son, and not me, who had EoE and that he seemed to be quite happy and fine at this time with not eating. “Let your son tell you when you should be worried,” she told me. What an epiphany!

3. Your son is growing up. You’re missing it.

My son had just turned 2 and was doing so many new things!. At some point my mom pointed out to me that I’d become so obsessed with trying to get calories into him and worrying about his future with food that I had stopped enjoying him and watching what a wonderful little guy he was. These years were going to go by, with or without EoE. I realized this is it- I need to enjoy our time in the present!

4. I love my son for exactly who he is and I don’t want to change him.

I had coffee with a father of a boy who had a very rare genetic disorder (XXXXXY disorder) that resulted in a variety of cognitive and physical difficulties for his son. He told me he loved his son for exactly who he was and to wish his disorder away would be wishing that his son was a different person.

5.My goal as a parent is to help my child grow to be best he can possibly be.

My good friend and neighbor’s 6-year-old son has autism and is non-verbal. A couple years ago, I called her asking her how she copes – she told me she keeps a note in one of her bedroom drawer to pull out as a reminder: My goal as a mom is to help my child be the best he can be. That’s really the bottom line, isn’t it?

From my perspective, I can definitely say that dealing with EoE has made us tougher and has taught us to appreciate life and health more. The comments I have shared in this column have genuinely affected me and have helped me cope. I hope you find them useful too.

Living with chronic illness: Focus on Teens, by Dr. Mary Klinnert                                         

Children and adolescents with an eosinophilic gastrointestinal disease (EGID) are faced with multiple coping challenges. With the help of family and friends, most children and adolescents are able to meet and overcome those challenges, develop normally and lead full and happy lives.  However, many youngsters with EGID do some stumbling as they attempt to manage their illness and take it in stride, and some fall into depressions that weigh them down, slow or stop their coping progress, and jeopardize their physical health and development.

We now know that EGID can be thought of as a chronic illness—an illness that may last many years, based on available information today. For youth growing up with chronic illness, each area of development can be impacted by challenges of the illness.  When children or teens are doing well, they are able to get along with family, develop and keep peer friendships, participate in enjoyable activities, sleep well at night, be happy most of the time, be able to ask for what they need and say how they feel, handle frustrations appropriately, and be comforted when they are upset. We know that the challenges involved with any chronic illness can impact each of these areas.  Having painful and unpleasant symptoms, needing doctor visits and medical procedures, missing school and peer activities, and feeling different from others can take a toll on normal emotional functioning for children and teens.  The same is true for symptoms and treatments that are specific to EGID; choking on food, having special diets, or obtaining nutrition through a feeding tube can be extremely challenging. Added to the ordinary challenges of growing up, these stresses can become overwhelming.

What are signs of depression in children and adolescents?  A depressed, sad, or ‘down’ mood or a decrease in interest or pleasure with activities that previously were enjoyed are key signs of depression. Children or teens may show withdrawal from peer relationships. Other signs of serious depression include a change in eating patterns leading to significant weight decrease or increase, inability to sleep, being physically agitated or slowed down, extreme fatigue, tiredness or lack of energy, decreases in the ability to concentrate, feelings of worthlessness or excessive guilt, or recurrent thoughts of death.  For both children and teens, feelings of worthlessness may come out in statements such as “I’m no good to anybody,” or “It’s all my fault that our family can’t ever do anything fun,”   Physicians and parents should be aware that children with EGID, who cooperate poorly with treatment plans may indicate anger, hopelessness, and depression.   

Parents of children with EGID will notice that a number of the signs of depression overlap with symptoms of EGID; for example, decreased appetite and weight loss as well as fatigue may be present when children are experiencing exacerbations of their disease.  This can be confusing for parents.  At these times, be alert to other key signs of depression, such as a depressed mood, a loss of interest or pleasure in favorite activities, or withdrawal from peers or family. If any such behaviors are noticed, talk with your child about them, and talk with your health care provider about how to obtain a professional assessment of the severity of your child or teen’s emotional responses to their disease.

If parents notice their child’s difficulties, it is important to check them out or talk to the doctor about them.  The emphasis of physician visits is often on physical symptoms and treatment effectiveness, thus the child’s emotional difficulties receive less attention.  Caregivers may feel that the child’s sadness or withdrawal is to be expected, given what the youngster is going through.  Or, parents may be working hard to keep up with the illness management demands of EGID and not notice the emotional aspects.  When other life stresses impact the family, the caregivers may feel overwhelmed making it more difficult to keep track of a teen’s coping abilities. When parents are stressed and depressed, their children cope less well, they fall down on their illness self-management, and they are more likely to become depressed and hopeless about being able to live a normal life.

When you have concerns about how your child is coping or whether your teen is depressed, talk to your doctor.  Physicians who work with youngsters with EGID are aware of the toll that the disease can take on children and families’ emotional functioning and quality of life.  They will refer you to a psychologist or counselor who works regularly with children and teens living with chronic illness, and with their families. This specialist can help to sort out how the youngster is managing emotionally, and also how the parents and family’s coping strategies are working, and determine if more intensive treatment is necessary.  Sometimes a few sessions for the family or for the individual child can help get everyone feeling better.  Your child and your family will benefit from having a clearer sense of the challenges you face and of your path to positive coping, and your child will have a better sense of how to grow up happy and satisfied.

© American Partnership for Eosinophilic Disorders 2004, 2006, 2008, 2010. Content may not be reproduced in part or in whole without express written consent from APFED. Contact us Mail@apfed.org