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?

Maya Lives Confidently with FPIES!

We’re thrilled to present a video snapshot on life with FPIES from our friend Maya! Some of you know Maya from our FPIES Education Conference, where her confidence and positive message provided one of the most uplifting moments of the day. She is also a member of IAFFPE’s new Teen Council, which focuses on providing a voice and empowering tools for older children with FPIES. To learn more about Maya, check out her “FPIES Champion” profile in our FoodPrints newsletter (see page 9).

This video launches IAFFPE’s exciting new initiative to connect with older children and adults who have FPIES and include them in the dialogue. Stay tuned for more videos, guest blog posts and resources for this important segment of our community!

Now Available: FPIES Education Conference Video Package

Miss the FPIES Education Conference? Looking for a better understanding of FPIES? Wish you had access to the best brains in the field? The FPIES Education Conference Video Package is now available!

This is your chance to get valuable access to the leading experts in FPIES care and research with three of the most content-rich sessions from last fall’s FPIES Education Conference. The video package includes the following sessions:

Allergist’s Perspective: The Nuts & Bolts of FPIES
Scott H. Sicherer, MD
In this primer about FPIES, you’ll gain a better understanding of common terminology used in the science surrounding FPIES.

From the Gut: Understanding GI in FPIES

Mirna Chehade, MD, MPH
This look at FPIES from the gastroenterologist’s point of view focuses on understanding the underlying mechanisms of FPIES and the condition’s effect on digestive health.

Q&A Panel Discussion
A panel of leading FPIES experts answers questions and discuss challenges in navigating an FPIES diagnosis.

The video package is only available for a limited time–click on the link below to learn more and get access today!

FPIES Education Conference Video Package

Learn more about the FPIES Education Conference here:

A Personal Account from the FPIES Education Conference

Travel Grant Recipient Shaula BrownThanks to Travel Grant recipient Shaula Brown for the following guest post looking back on her experience at the 2013 FPIES Education Conference. For those in our community who couldn’t share the day with us, stay tuned as the video will soon be available featuring some of the highlights and valuable information that was presented at the FPIES Education Conference.

After coming home from the 1st Annual FPIES Conference put on by IAFFPE, I am feeling grateful, renewed, and energized. I learned so much!

I was so excited to hear about the first FPIES Center to be launched at CHOP. We are lucky to have good doctors here in Denver, but I know others are not and I can only imagine the benefit of having so many doctors in one place focusing on FPIES care and research.

It was also very interesting to see the information being presented on chronic reactors as well as acute reactors. My son Ryan has had both types of reactions but tends more towards the chronic side. Our allergist has diagnosed Ryan with FPIES because of his acute reactions but told me that his chronic reactions are not FPIES and instead are just intolerances. It was great to see that chronic reactions are not only very real but are also a recognized part of FPIES. The charts that compared FPIES to other GI and allergy disorders were helpful too. I really got a better, more detailed understanding of the way FPIES works. I also feel more confident in managing the daily issues that we’ll face, from food trials to how to handle FPIES in social situations.

1390623_641234089255917_1757669574_nI can’t begin to describe to someone with a healthy child how lonely and isolating this world of FPIES is. I feel alone, confused and discouraged so often, but the conference let me see that I am not alone. The chance to meet and connect with other parents and even some older children with FPIES was a huge gift. It let me know that I am not in this alone, I am not crazy, and we will get through this—we will survive this! The conference also helped me to understand that my needs as a parent and caregiver are important too.

I am fired up and energized to help spread the information I received to others. I am hoping to meet with other parents in my area to share what I learned (and hopefully turn that meeting into a regular support group). Ryan’s pediatrician also asked if she could get more information from the conference to educate herself, the other doctors she works with, and her other patient with FPIES. I can’t wait to pass along the information to her!

As much I got out of the conference, I know there is still more to learn and more to share. I’m excited for the conference video to come out so that others can see the highlights and get a sense of how special it was for our community to connect and learn together. I am already looking forward to next year’s conference with the hope I can attend again. I want to thank IAFFPE for the generous travel grant that allowed me to attend the conference. I am so thankful I was chosen and can’t wait to work more with them in the future!

Countdown to Philadelphia!

chop-exterior3-lgWe’re counting down to the 1st Annual FPIES Education Conference–less than one week away! Today, our Travel Grant recipient Shaula Brown shares her thoughts and two videos as she prepares to make the trip to Philadelphia. Like so many FPIES parents, Shaula has a long list of questions she hopes to have answered. The conference includes two Q&A sessions where FPIES families can have their general questions answered by our panel of speakers. Thanks for sharing your journey with us, Shaula!

Hi! My name is Shaula Brown, and I am the recipient of the 2013 FPIES Education Conference Travel Grant. I have one son, Ryan, who is 8.5 months old and was diagnosed with FPIES at 5.5 months after many months of suspected reflux and dairy allergy. He is currently FPIES to dairy, soy, rice, squash, and sweet potatoes.

I’m very excited to have the opportunity to travel to the conference from my home in Colorado with the help of the IAFFPE. We are new to this journey, and I have so many questions I hope we can get answered. In particular, I am looking forward to the session “Clinical Management: From Diagnosis to Food Challenges”— I am always curious about how we should be trialing foods at home and what to expect as we continue into hospital trials with some of my son’s bigger fails.

VIDEO 1: Shaula Prepares for FPIES Conference: Questions About Food Trials

I am also interested in the session on “Filling the Nutritional Gaps.” Ryan currently has only one safe food plus his elemental formula. I hope to learn more about good, nutritious things to trial and introduce. I am also hoping to get more information about how to keep him safe when he is away from me, whether it’s at school as he gets older, at his grandparents, or with a babysitter. I am always worried he will be given something or he will find a way to accidentally ingest something he shouldn’t.

VIDEO 2: Shaula Prepares for FPIES Conference: Questions About Medicine

I know these are the same questions and fears many of us have as FPIES parents, and it will be wonderful to meet others who share this experience. I am not only thrilled to have the opportunity to attend the FPIES Education Conference, but I’m also looking forward to sharing the information I learn with Ryan’s doctors, family, friends, and other parents of children with FPIES. Thank you for the opportunity!

There’s still time to reserve your spot for the 2013 FPIES Education Conference on October 20th in Philadephia. For our friends who can’t make it, you can still connect with us on Twitter (@iaffpe) for live tweeting under the handle #fpiesconf. And we’ll be posting updates here on Facebook throughout the day. You can also submit your general FPIES questions to contact@iaffpe.org for the two Q&A sessions with our panel of experts.

We hope to see you next Sunday!

Meet IAFFPE’s Education Ambassador Michaela Wells!

Michaela Wells, IAFFPE Education AmbassadorIAFFPE is proud to announce Michaela Wells as our first Education Ambassador. Our Education Ambassador program gives siblings and older children with FPIES the opportunity to raise awareness, share their stories and make a difference in our community. Each Ambassador will share their journey through video and blog posts. We’re thrilled to have Michaela attend our FPIES Education Conference next month and report back on her experience!

15-year-old Michaela is proud to promote FPIES as her platform during her reign as Miss Nebraska Teen through the USA National Miss Scholarship Organization. It’s a cause dear to her family: her three-year-old brother Kainen has FPIES.

Like many FPIES families, the road to Kainen’s Michaela's Brother Kainen Has FPIESdiagnosis was long and filled with worry and confusion. His struggles with food began shortly after birth and continued through multiple hospitalizations until he was finally diagnosed with FPIES at 17 months old.  These days, most of Kainen’s diet consists of medical formula (Elecare Jr.) and his favorite leafy greens, berries, and salmon. He is FPIES to dairy, soy, eggs, beef, poultry, legumes, and brown rice. Today, Kainen is seen by the team at the Food Hypersensitivity Clinic at Omaha Children’s Hospital and Specialty Center in Omaha, Nebraska.

Michaela is committed to raising FPIES awareness and sharing her family’s story in the hope of preventing other children from going undiagnosed. She also brings an important message that life with FPIES is a family affair, and siblings play a crucial role.

She wants children and siblings living with FPIES to know that communication and knowledge are empowering tools. After all, siblings and older children with FPIES can play an important role in educating teachers, other family members, friends, and the public about this condition.

Miss Nebraska Teen at National Nite Out BaconfestAs she prepares for her trip to the USA National Miss Pageant in June, she’s sharing her activities and platform here. Everything she raises beyond funding her trip to Nationals will be donated to IAFFPE.

Since May, Michaela has been hosting a booth at a local farmer’s market with FPIES-friendly baked goods that are free of dairy, soy and eggs. She also has a backdrop display of the products her family uses in place of Kainen’s trigger foods, as well as information from IAFFPE about FPIES and how it affects her brother and other kids like him. On Labor Day, Michaela hosted a “Queen Meet and Greet” table at the Nebraska State Fair, where she signed autographs, spoke about FPIES, and handed out educational materials to raise awareness.

In addition to attending the FPIES Education Conference in October, she’ll attend a VIP Reception in the Atlanta for her National Dress Sponsor, Bravura, where she’ll spread the word about FPIES with fellow guests who are always on the lookout for a worthy cause to support. In November, she’ll have an informational table on FPIES at Worldfest with kid-friendly activities and a short presentation onstage to address the crowds. Michaela is also in the process of starting up a benefit pageant entitled “Royalty for FPIES” to benefit IAFFPE and families living with FPIES.

As our Education Ambassador, Michaela looks forward to sharing her message of hope, education, and empowerment with all FPIES families! We are so impressed by this busy, accomplished young lady and thankful for the work she is doing on behalf of our community.

We Have a Winner!

Brown Family IAFFPE Travel  GrantIAFFPE is thrilled to award Shaula Brown our $500 Travel Grant to attend our 2013 FPIES Education Conference in Philadelphia, PA on October 20th. Shaula is the mother of 7-month-old Ryan, who was recently diagnosed with FPIES after many months of pain and uncertainty. Our travel grant program seeks to encourage and support families in need, and Shaula’s award will enable her family to cover conference-related expenses such as airfare and lodging.

The Browns have faced the same challenges that so many FPIES families face: the pain and worry of a delayed diagnosis; the lack of a cohesive team to guide them; the stress and monetary burdens. Shaula had a strong desire to attend the conference but it wasn’t financially possible to make the trip from her home in Colorado. With no safe foods, Ryan’s only source of nutrition is costly elemental formula that is not covered by the family’s insurance.

“I can’t even begin to fully express what it to means to me to be able to attend the conference and to get the support we desperately need,” Shaula said when we notified her of the award. She is excited to take on an active role to educate others about FPIES and spread IAFFPE’s message. She looks forward to sharing thoughts and videos from her conference experience with the entire FPIES community. Prior to receiving this grant, Shaula was already active in sharing her FPIES journey and raising awareness by blogging and guest blogging.

Thank you to everyone who applied for IAFFPE’s Travel Grant for the 2013 FPIES Education Conference. The decision-making process was a very difficult one, with so many worthy applicants and only a limited amount of grant dollars. We were touched by the compelling stories we received and plan to expand our grant program for future conferences.

We are excited to give this family the opportunity to find some hope and support at our gathering of parents and experts. Congratulations Shaula!