Notes from FPIES Dads

Notes from FPIES DadsHere’s to all the dads who rise to the challenge and do so tirelessly and with so much love!

At IAFFPE, we’ve gotten to know some amazing fathers. We’re very fortunate to have several dads as part of our Executive Board. In addition, we met a remarkable group of dads at our FPIES Education Conference last October; they shared an immediate connection. We followed up with these dedicated dads to learn what advice they had for other fathers who are new to FPIES. We also asked what they wanted FPIES moms to know. There is no better time then Father’s Day to share their responses.

What advice do you have for dads who are new to FPIES?

“Give your wife some room to work, and make sure you are amazingly supportive of her. She is going to be on the front lines as you try to figure out safe foods. Get your hands dirty and make sure you do your part around the house so that she can concentrate on taking care of your baby.”

“The best advice is to reach out and ask for help. Lean into resources like IAFFPE and work on having a support group. My wife and I are always a team in supporting each other with the issues we are faced with. Educate yourself as much as possible and don’t be afraid to fight for your child and ask questions to make sure they have the best care possible. I know for me, having a game plan and the support of my family and friends is huge. It’s hard as a Dad to open up about these things, but the more you can surround yourself with help and support, the more strength you will have to deal with issues that come up.”

“Learn to cook weird food, wife is usually right, and patience.”

“I want to let new dads know that there is a lot of information out there and to make sure they look at as much as possible. And to make sure they receive that information from a reputable source. We may not be able to recite all of the medical terminology but that knowledge is empowering.”

“Dealing with FPIES on a day-to-day basis can be stressful for mom. It’s important that she regularly schedule some alone time to unwind and refresh. Whether she wants to spend it reading, going to the gym, or getting a manicure, she deserves her alone time. In our case, my wife finds running to be great stress release. She joined a local running club, and we coordinate schedules so she can go twice a week.”

“Although they have a hard journey ahead, it’s not the end of the world. A lot of changes will be needed to make their house a safe place (especially if they have more kids), but it can be done. Their social life will change quite a bit too, since only a few restaurants are able to receive children with food allergies, and parties and other social occasions will always be a “risk.” Luckily, they can rely on organizations (like IAFFPE, FPIES Brasil, etc) that can provide valuable information and support to help them on this journey.”

“FPIES isn’t a condition that we can ‘fix,’ but it is a condition that we can help successfully manage. As a husband and father, I feel like it’s my duty, my responsibility to fix problems that occur with my family – physically, mentally, emotionally. Whether a water main breaks, my child gets a nose bleed or my wife catches the flu, I want to take action to make it better. With FPIES, there is no quick fix. I can’t go to the drug store to buy a pill. FPIES is a long-term condition that must be managed daily.”

What do you want FPIES moms to know?

“We are together on this journey, and we have to always join forces. There will be hard times, but the stronger the team, the easier we’ll get through each challenge.”

“Know that you and your husband are in the same boat. One of the hardest things for me to watch was my wife struggle with our son and his food issues. Luckily, we are a great team and this journey has made us even closer. If you’re not on the same page, do everything you can to get there.”

“Dads also go through a very difficult time. In some ways, they lose their wives to the condition, and often feel left out in the cold as their wives dive into the support groups and boards. Make sure you remind them they are an important part of the process and involve them as much as possible.”

“While managing FPIES may, at times, seem overwhelming, you don’t have to take on the burden alone. Include dad as much as possible in the decision making. Whether you’re trying to figure out which food to trial next or how to deal with your insurance company, he may have insights or a different viewpoint that may be beneficial.”

“How frustrated dads are not to be able to fix it. And we may not express it adequately or often enough, but you are doing an amazing job. As terrible as FPIES is, it has shown me my wife’s strength and stamina.”

If you’re the father of a child with FPIES, we’d love to hear from you in the comments section below. What insights have you gained along the way?

9 Reasons to Attend the FPIES Education Conference

IAFFPE’s 1st Annual FPIES Education Conference is only two months away, and we’re very excited about the program, speakers, and the opportunity for our FPIES community to gather under the same roof!

Need more convincing? Here are our top nine reasons to attend the FPIES Education Conference:

1. Learn from the best. We’re bringing together the leading experts in FPIES care and research for a powerful agenda focused on the topics that matter most to you.

2. Connect with people who “get it.” This is the only event of its kind, bringing together parents and physicians with a mutual interest in helping patients with FPIES.

3. Your voice matters. There will be Q&A sessions and a networking lunch to share your thoughts, questions, and experiences.

4. Be the first to know. You’ll get the inside scoop on some of the most recent research developments and exciting initiatives related to FPIES.

5. Be part of FPIES research. Participate in a live research study that looks at the quality of life for FPIES patients and families.

6. Get take-home tools. Many of the sessions will feature valuable tips that you can learn from immediately and implement into daily life.

7. Location, location, location. Philadelphia is easily accessible from almost everywhere, with Amtrak stations and a nearby airport.

8. The power of community. No problems are insurmountable when thoughtful people gather together and focus.

9. Leave with new ideas, resources, and the confidence that there are better days ahead.

Space is limited — reserve your spot today. For the event brochure and all the information you need, visit our main conference page.

As a reminder, early bird registration is only available until September 23rd. And if you’re looking to book a discounted hotel room, make sure to do it soon as that deadline is also September 23rd.

We welcome the chance to answer any questions you may have about our conference. Please email us at contact@iaffpe.org. And let us know what you’re looking forward to most about the 2013 FPIES Education Conference!

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.