Share How you Care: Rare Diseases Day 2014

From the moment we hold our child for the first time, to catching them when they fall down on the playground, to helping them through food trials and reactions, one of our largest jobs as parents is simply: CARE. 

At the moment our child's medical team meets him or her, we hope to see them learn about our child, foster a relationship with him or her, and work with us to help get our child well as we continue this partnership over time. We look to our children's treatment team to demonstrate that same quality at its core: CARE.

We see it when our older child comforts our young one when he/she can't share a treat, when the playgroup remembers and provides a food-free play space, when rare diseases organizations join together to support patients all over the world in the name of improved quality of life for these patients young and old. 

Care is at the center of our humanity.

This year's Rare Disease Day touches on this theme, one very near and dear to our hearts. Care is the heart of our mission at The FPIES Foundation and care is what truly defines our FPIES community. We have seen family's supporting each other's children without ever even meeting them, sharing recipes/ cooking tips and parenting suggestions, celebrating each other's victories and offering comfort during struggles. 

 We do not have nearly enough space to share all of the acts of care that we witness daily in this incredible community, but to celebrate this Rare Diseases Day, we want to share with our readers a sample of the ways that families affected by FPIES and medical teams supporting them exhibit how they care for someone diagnosed with FPIES:

• "I educate a mom about FPIES every chance I get". ~Jean S.

• "Lots of alternative cooking:-). Almond flour pancakes for lunch today!" ~Erin G.

• "Hug and kiss her little face off!!!" ~Devyn F

• "I look for creative ways to serve his safe foods - it helps him be included at meal times with his brothers." ~Joy M. 

• "Try to teach my two year old girl why can't she eat like everyone else and pray to God that her natural curiosity won't hurt her." ~Heli Z. 

• "I make her days as normal as possible and always remind myself that she is healthy and enjoying life!" ~Katrina P. 

• "I am extended nursing my FPIES baby, my diet is free of her known triggers, I make FPIES friendly meals, research, doctor appointments, ever vigilant about food left out in public, non stop floor sweeping, read ingredients every single time, pack our own meals for family gatherings, outings and vacation. FPIES means no carryout or frozen food even on a busy or sick day. Looking at every sippy cup left out at school, church, park, museum, zoo..... As a danger"  ~Rebecca S. 

• "All the things mentioned above, plus trying to find safe ways to treat my LO when he is sick. He reacts to every medicine we've ever given him, so I try to use those as a last resort." ~Carrie S. 

• "Treating her just like big brother. But she knows what "makes her belly hurt". We've made a point to educate both children. Big brother even tells servers in restaurant "don't give my sister my sister cheese. She has dairy allergies." Love that the whole family is educated enough to watch out for our little girl." ~Jamie H. 

• "Making safe food look like everyones in the family" ~Brandy W. 

• "Loves, hugs and kisses  Also researching formulas and foods in order to keep him healthy when his safe formula runs out."  ~Cyndi M. 

• "Cleaning! Every single crumb on the floor needs to go!"  ~Natasha D. 

• "Every day working towards as much normalcy as is possible, through cooking, educating my small fries and anyone that may encounter them, and finding ways for them to just be kids, despite the craziness that FPIES brings to each day!"  ~Amanda L. 

• "I've learned how to garden and how to cook (beyond just heating something pre-packaged up in the oven!"  ~Victoria R. 

• "Trying many different recipes to find a safe cake or cookie for his first birthday next month...and then finding that he won't eat any of them because of a texture issue! (he gags on anything that is not puréed except cheecha puffs). Sigh. Now going to try more recipes to find a safe pudding that maybe he will enjoy on his birthday!"  ~Abigail M. 

• I get involved with raising Awareness ~Victoria R. 

• "Children and the families of children with rare and unusual medical conditions cry out for help and understanding. All too often those individual cries go unheard- unheard because they are not loud enough to be heard. When these children, their families and their health care providers unite- their unified voice is stronger, that voice and message that it carries is heard and can begin to be understood by others. Strength of purpose comes from joining together, joining talents and strengths to make a real difference." ~Dr.L

Now its your turn--- please tell us how you or someone you love cares for someone diagnosed with FPIES! 

This post was written by the Executive Board of The FPIES Foundation 

FPIES: Caring for the Caregiver

FPIES: Caring for the Caregiver

Nichole L. Huff, Ph.D., CFLE

                Recently I read an article by the Family CaregivingAlliance¹ on caregiver stress.  As an introduction to the topic, the author compared the need to reduce caregiver stress to the safety rules given just before takeoff on an airplane—the ones that instruct you to place your oxygen mask on first before trying to help a child or dependent in the event of an emergency.

                Although it was a simple analogy, I couldn’t help but connect its message to FPIES caregiving: We can’t help someone else survive unless we first take time to help ourselves.  I could fully relate.  As the parent of a child with FPIES, I can remember moments at the beginning of our journey where it felt like I was fighting to breathe.  Restless nights when my husband and I would forego sleep so that we could watch our son in the event of a life-threatening delayed reaction.  We spent much of our son’s infant and toddler years walking on eggshells—fearfully tiptoeing around life instead of living it.

At the time, I wouldn’t have considered my husband or me to be caregivers.  But as we approach Rare Diseases Day, of which FPIES makes the registry, I realize that’s exactly what FPIES parents are—we are caregivers.  We provide care for our children with FPIES so that they can lead healthy, safe, and thriving lives despite their special dietary needs. 

In the United States, a disease or disorder is defined as “rare” when it affects fewer than 200,000 Americans at any given time. ²  Sometimes being rare is a good thing—like when you have a special talent or skill that sets you apart.  Other times, however, being “rare” can make you feel alone, which adds to your caregiving stress.  When my son was first diagnosed with FPIES, I searched for other parents with whom to connect.  I so desperately wanted answers, hope, and to find someone who could relate to our situation.  Thankfully, organizations like the FPIES Foundation and online support groups for parents of children with FPIES have helped me to see that while FPIES is rare, we are not alone in our battle.

As social awareness increases for children with food allergies, so does research on the effects of allergy management on a family’s quality of life.  According to researchers, areas of family life affected by allergy management include family activities (e.g., restaurant meals, social activities, childcare, vacation), decisions regarding schooling, time needed for meal preparation, health and general safety concerns for the allergic child, and parental emotional issues (e.g., anxiety or depression directly related to managing the child’s allergy).³  To combat the ill-effects of caregiver stress, we need to be as mindful to care for ourselves as we are to care for our children with FPIES.

                To be an effective caregiver, don’t forget to put on your oxygen mask first.  While you strive to provide a safe, healthy, and loving environment for your child with FPIES, chances are you’re putting your physical, emotional, and social needs to the wayside.  A good rule of thumb?  Work towards balance in these areas.

  

Physical

• How are you caring for yourself physically?  Are you getting enough rest?  Are you making time to exercise?  Are you as worried about your diet as you are your child’s?  How do you relax?

• When you’re physically exhausted, you not only wear down your immune system, but your likelihood of developing depression or anxiety increases.  Examine your weekly routine and make sure you’re getting the sleep, nutrients, and downtime your body and mind need.  Find a gym that offers childcare.  Once a month schedule a spa treatment or a round of golf.  Stroll your kids around the neighborhood or a local park.  Examine your diet.  Is it balanced?  Rely on food for fuel, not for comfort.

Emotional

• Side effects of stress, including depression and anxiety, can wreak havoc on our emotional states.  If you find yourself short-tempered, easily irritated, or crying more often than usual—or if your emotions ever interfere with everyday tasks such as socializing or driving—then chances are, your stress-levels are too high.

• Depression and anxiety are real—and they can cripple our ability to function in everyday situations.  They result from chemical imbalances in the brain and body, often as a direct effect of stress.  If you’re concerned that you may be suffering from depression or anxiety, talk to a therapist or a physician about treatment options.  Seeking help isn’t a sign of weakness.  But rather, taking care of your emotional health is vital to your happiness and your ability to keep stress at bay.

Social

• Do you make time for fun?  (Or should I ask: Do you remember what fun is?)  Do you spend time with your friends apart from your kids?  Do you schedule play dates with other parents and children (or do you shy away from situations that may involve food)? Do you and you partner make time for each other?

• As a busy parent, spending time with other adults often falls off our radar.  Especially for parents of children with FPIES, who also have to worry about educating sitters, childcare providers, even family members, about safely caring for our children.  If you haven’t already, find trustworthy childcare.  Whether you build in a once-a-week coffee date, a monthly book club, a Zumba class, or a standing date night, make time to socialize with other adults. 

Remember, caring for yourself (the caregiver) is essential to your overall well-being.  The more balanced you are physically, emotionally, and socially, the better able you are to love and care for your child, and to tend to his or her rare FPIES needs.

  

References:

¹Family Caregiving Alliance. Taking Care of YOU: Self-Care for Family Caregivers. Available:

http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=847

²Rare Diseases Day is February 28, 2014.  Learn more at: http://www.rarediseaseday.org 

³Cohen, B. L., Noone, S., Muñoz-Furlong, A., & Sicherer, S. H. (2004). Development of a questionnaire to measure quality of life in families with a child with food allergy. Journal of Allergy and Clinical Immunology, 114(5), 1159–1163.

As the parent of a son with FPIES, Dr. Nichole Huff is an assistant professor and Extension Specialist at North Carolina State University.  Dr. Huff has a Ph.D. in Family Sciences and a M.S. in Marriage and Family Therapy.  She is a Certified Family Life Educator (CFLE) with the National Council on Family Relations.  Her areas of research include child development, parent-child communication, and bio-psycho-social health.  Dr. Huff also maintains a parenting blog at http://soapboxmommy.com/

Feeding Tube Awareness Week 2014

Feeding Tube Awareness Week®, launched in 2011 by the Feeding Tube Awareness Foundation, is a unique opportunity to raise awareness about feeding tubes.  

There are several reasons a child may need a feeding tube.  Food allergies can be one of those reasons and some infants/children living with Food Protein Induced Enterocolitis Syndrome depend on feeding tubes for their nutritional needs.  

What types of feeding tubes are there? There are different types available to meet different children's needs. These include NG Tubes, NJ tube, G-tubes, GJ Tubes and IV Nutrition-- a child's doctor and his/her family will work together to determine which tube is the best fit for the child's situation. For partial nutrition or complete nutrition, from overnight feeds to bolus day time feeds, blenderized diets or elemental diets-- whatever the means or the delivery, the goal is the same: to provide nutrition for optimal growth and development. 

Whether for a family's own education, or to help to educate others and to spread awareness, the Feeding Tube Awareness website has all the information families and their loved ones could need about feeding tubes. Check it out today!

This post was written by the Executive Board of The FPIES Foundation