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Food Allergy Support Group Offers Recipes, Research and Reassurance

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When 5-year-old Drew Hebert was an infant, he suffered from severe eczema, cradle cap and reflux. New mom Pahla tried to switch him from breast milk to cow’s milk, and he immediately vomited and developed hives. Worried, she took her 8-month-old son to an allergist’s office, where he was diagnosed with severe milk, egg, peanut, tree nut and fish allergies as well as an allergy to chicken.

“We moved to Dallas when Drew was 9 months old, and his new pediatrician told us we were lucky because a Food Allergy Center had just opened at Children's,” said Hebert. “So I took Drew, and we met Dr. Bird and his staff. Right off the bat, it was a relief to receive more specialized care – we were given information and resources for his diet, rather than just being told to avoid the allergens.”

Drew is tested annually for allergies, and the Heberts have found he’s also allergic to flax seed and pumpkin seeds – a reaction he shares with one of his twin 2-year-old brothers – as well as turkey, but that he is not allergic to almonds and shellfish. Dr. Bird currently has Drew safely ingesting two allergens – baked milk and baked egg – of which he can tolerate small amounts. The hope is that he’ll eventually outgrow those allergies.

Having a child with severe food allergies – especially several of them – presents significant everyday challenges for the Hebert family. They need to make sure parties and family gatherings don’t feature foods like pizza, cheese trays, eggs or nuts because if another child even touches Drew with the food on his hands, he has a reaction.

Pahla Hebert packs allergen-free cupcakes and cookies for friends’ houses and preschool, meets with teachers and school directors to explain the importance of wiping other children’s hands and keeping Benadryl and an Epi-Pen on hand. Restaurants are a rarity, and even family vacations are stressful because most ice cream parlors and eateries don’t accommodate all of Drew’s allergies.

Experience and Empathy

As she learned these life lessons on the fly, Hebert had a thought – wouldn’t it be wonderful to have a network of parents all going through the same thing, a support system that really understood the challenges. Dr. Bird told her he didn’t know of any such support group and suggested she start one. And so, she founded the Dallas Food Allergy Network (DFAN) in Oct. 2011 – a group that now has 139 members with Dr. Bird as the medical advisor.

“I know how isolating it can feel having a child with severe food allergies,” says Hebert. “I also know that there's a steep learning curve concerning how to feed your child, get medical care, manage school, and the list goes on. I wanted there to be a way for local parents to support and share information with each other.”

DFAN initially met monthly and hosted a guest speaker at each event. Since the group members are spread throughout the area, and very busy, they’ve currently shifted to mostly online communication. Within the group, parents:

  • Share information about store-bought products, allergen-free cookbooks and recipes, local restaurants and vacation spots suitable for children with food allergies
  • Discuss healthcare, clinical trials and the latest research toward finding a cure
  • Communicate via a private Facebook community page as well as share information with family and friends on the group’s public page
  • And talk about managing safety and other issues at school

“So far the group has been about sharing information and supporting each other, but I have always intended for us to take part in community initiatives to raise awareness and possibly donations to FARE (Food Allergy Research Network),” says Hebert. “It's important for food allergy families to understand they aren't alone in facing these challenges. As a community, it makes us stronger and more educated in how to protect our kids. It is also important for each of us to raise awareness in small ways – in our families, community of friends and schools.

 

 

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