Living with FPIES: A Family Affair

Living with FPIES: A Family AffairWhen a child is diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES), his/her family members often feel the stress as they try to learn how to help their child/sibling cope with the condition.

Communication and knowledge are two key tools in helping siblings understand and feel empowered. In this way, a sibling can become advocate for an FPIES child, educating teachers, other family members, and friends about the condition. Moreover, an FPIES child will feel the family support they need to face the challenges of living with FPIES.

Challenges to Family Life

It can be difficult for both parents and siblings to watch a child suffer symptoms of FPIES. Siblings may not understand that extra attention is needed because of the severity of the symptoms and because of the time and resources it may take to manage FPIES. It is vital to understand both needs of a child with FPIES as well as other family members who do not have the condition.

How do siblings feel about FPIES? Reactions and experiences can be as unique as your child. It’s normal to have a range of reactions from anger to guilt, and it’s helpful to children permission to have varied emotions. Some children worry that they themselves or other family members may develop FPIES, while some wish they had FPIES to receive more attention. It’s important not to show disapproval of such responses; let your children know that you understand their feelings.

IAFFPE has a wealth of resources available to families living with FPIES. For more practical tips, help

Get Siblings Involved

Dietary restrictions are not always easy to enforce in a house where multiple children live, not all of whom have FPIES. Parents may want to discuss what FPIES means with the whole family and explain how everyone in the family can be a part of the child’s healthcare. Cooperation, understanding and frequent communication can benefit both siblings and the child with FPIES.

All members of the family should learn as much as possible about FPIES (where age-appropriate) so they are better able to understand what their sibling is going through. And the FPIES child should be as much a part of family activities and discussions as possible. Older siblings in particular can take an active role in helping a child cope better with FPIES and feel included and vital to the family.

Living in a Home Where Food Is Restricted

Of course, siblings of children with FPIES may be reluctant to follow food restrictions while at home. You can help alleviate this by inviting your other children to become part of the solution. This will help give them a sense of empowerment over the situation and feel included instead of left out. As an example, ask your other children to assist in shopping for safe foods, reading labels, helping to cook new recipes, and tasting new recipes to offer their opinions.

Often, families find it beneficial to have separate shelves in the pantry for each sibling. If your child with FPIES has his/her own “supply” of safe foods and siblings do as well, this can increase the feeling of equity.

On an encouraging note, siblings involved in age-appropriate caretaking activities in the home have been shown to develop more empathy than other children. Research also shows positive effects on self-esteem, resilience, and family closeness when a household rallies as a unified front to manage the daily demands of a restricted diet.

IAFFPE has a wealth of resources available to families living with FPIES. Find more practical tips and helpful handouts here: http://iaffpe.org/living_with_fpies_families.html.

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