Raising an infant is a journey filled with joys, challenges, and countless learning moments. When your child has Food Protein-Induced Enterocolitis Syndrome (FPIES), the already difficult journey of parenting becomes even more challenging and complex.
What Is FPIES?
Food Protein-Induced Enterocolitis Syndrome (FPIES) is a rare type of food allergy that affects the gastrointestinal system. Unlike typical food allergies that are mediated by IgE antibodies and can cause anaphylactic shock, FPIES is non-IgE-mediated. That means FPIES will not lead to an anaphylactic episode but will have delayed and severe reactions.
What Are The Symptoms of FPIES?
The possible signs of FPIES often occur hours after consuming the trigger food. They include:
- Vomiting
- Diarrhea
- Dehydration
- Pale skin
- Low energy
- Abdominal pain
- Unintended weight loss
What Foods Are Most Commonly Linked to FPIES?
Common triggers for FPIES include:
- Cow’s milk
- Soy
- Grains (rice, barley, oats)
- Certain vegetables, and more
A diagnosis of FPIES often involves an elimination diet and oral food challenges under medical supervision. Management requires strict avoidance of known triggers and careful dietary planning.
Tips for Living with FPIES
Here are some strategies to help parents cope while raising an infant with FPIES:
1. Educate Yourself About FPIES
Knowledge is empowering. Understanding FPIES—its symptoms, triggers, and treatment options—can alleviate much of the anxiety associated with the condition. And don’t stop at the list in this blog- consult with your pediatrician, seek out a specialist, and read from reputable sources. Joining support groups, either online or in person, can also provide valuable insights and shared experiences with other parents.
2. Create a Safe Feeding Plan
Work closely with your child’s healthcare provider to develop a safe and nutritious feeding plan. This typically involves identifying and strictly avoiding trigger foods while ensuring your child receives adequate nutrition. Introduce new foods one at a time, with careful monitoring for any adverse reactions. Keep a detailed food diary to track your child’s intake and reactions, which can be immensely helpful for your medical team.
3. Have an Emergency Plan
FPIES reactions can sometimes be severe, requiring immediate medical attention. Have an emergency plan in place, including a list of symptoms that indicate a severe reaction, such as persistent vomiting, lethargy, or signs of dehydration. Ensure you know the quickest route to the nearest hospital and keep an emergency bag packed with essentials, including medical records, a change of clothes, and any necessary medications. Having a clear emergency plan in place can help reduce anxiety, increase confidence, and limit decision-making during stressful and overwhelming moments.
4. Build a Support Network
Don’t hesitate to lean on family, friends, and community resources. Inform your close circle about your child’s condition and how they can help, whether it’s by learning how to handle a reaction or simply providing emotional support. Connecting with other parents of children with FPIES can also be incredibly reassuring and provide practical advice from those who truly understand your situation. The FPIES Foundation is an excellent organization for getting connected to resources for caregivers.
5. Focus on Self-Care
Caring for a child with FPIES can be physically and emotionally draining. It’s crucial to prioritize self-care to maintain your well-being. Make time for activities that relax and rejuvenate you, whether it’s reading, exercising, or enjoying a hobby. Don’t hesitate to ask for help when you need a break. Remember, taking care of yourself is not selfish—it’s necessary for you to be the best parent you can be. If it feels like too much to commit to scheduled self-care activities, that’s okay. Parenting can be a consuming job! Try connecting small self-care activities to otherwise immovable habits that anchor your day. For example, practice deep breathing and meditation while you drink your morning coffee or for five minutes after your child goes to bed.
6. Stay Positive and Patient
Managing FPIES is a marathon, not a sprint. There will be ups and downs, but maintaining a positive outlook can help you cope with the challenges. Celebrate small victories, like safely introducing a new food or a day without symptoms. Patience is key, as it can take time to identify triggers and develop a stable feeding plan.
7. Seek Professional Help When Needed
Don’t be afraid to seek professional help beyond your pediatrician. This could include:
- Pediatric gastroenterologists. They can provide essential support in diagnosing and making medical recommendations for children with FPIES. A pediatric gastroenterologist can also write a prescription for a hypoallergenic formula, which can reduce costs for specialized formulas significantly for those with insurance coverage.
- Dietitians. They can provide tailored nutritional advice for even the pickiest eaters.
- Speech pathologists who specialize in feeding therapy. They can assist in transitioning to solids if your FPIES child has a fear of new foods or struggles with the fine motor skills of eating.
- Therapists can offer support for coping with the emotional aspects of raising a child with a chronic condition.
- Early intervention services can assist with any developmental concerns.
If managing all these different providers seems overwhelming, then start with your pediatrician and ask them for referrals to clinicians they have already worked with. If your providers have pre-existing professional relationships, it can sometimes become a simpler process for them to work together.
8. Advocate for Your Child
Be your child’s strongest advocate. This might involve educating caregivers, teachers, and other parents about FPIES, or ensuring that all caregivers know how to respond to a reaction. Trust your instincts and speak up if something doesn’t feel right. If your infant is arching their back, repeatedly projectile vomiting, red-faced crying for extended periods of time, or hard to settle hours after eating, be sure to advocate for your child. Make sure that the pediatrician understands that you are observing distress that is more severe than typical colic, spit-up, or reflux.
You Are Not In This Alone
Raising an infant with FPIES presents unique challenges, but with the right strategies and support, it’s possible to navigate this journey successfully. By educating yourself, creating a safe feeding plan, building a support network, and prioritizing self-care, you can provide the best care for your child while maintaining your own well-being. Remember, you are not alone in this journey, and there are resources and communities ready to support you every step of the way.
Scotch Plains Counseling For FPIES
A therapist familiar with FPIES can be an invaluable resource for families navigating this complex condition. Therapists can offer emotional support, helping you process the stress and anxiety that often comes with managing a chronic food-related illness. A therapist can also provide guidance on coping strategies for both parents and children, aiding in stress management, and addressing feelings of isolation or overwhelm.
Additionally, therapy can be a safe space to work through any impact FPIES may have on family dynamics, helping parents communicate effectively and advocate for their child’s needs. By working with a professional who understands FPIES, you can gain tools to manage the emotional toll while ensuring that both you and your child thrive.
Parenting Help Near Westfield, NJ
At Brave Minds Psychological Services, we understand that every parenting journey comes with its own unique set of challenges, whether you’re navigating a chronic condition like FPIES or facing more common struggles such as behavioral concerns, anxiety, or family stress. Our team of experienced therapists is here to support all parents as they work to foster healthy relationships with their children, overcome obstacles, and build resilience. We offer a safe, compassionate space to explore your concerns, develop effective strategies, and find the balance and confidence you need to thrive as a parent. Start your therapy journey with Brave Minds Psychological Services by following these simple steps:
- Contact Brave Minds Psychological Services for a free consultation
- Meet with a caring therapist
- Start creating a plan and navigating the challenges of FPIES.
Other Services Offered by Brave Minds Psychological Services
Counseling for parents isn’t the only service offered at Brave Minds Psychological Services. Other services offered include child sexual abuse therapy and food allergy therapy. For teens, we provide anxiety treatment for teens, and teen social phobia therapy. We also specialize in adult anxiety counseling, postpartum counseling, birth trauma therapy, and sexual assault counseling for adults. Other offerings include online therapy, group therapy, couples counseling, and child therapy.
Furthermore, we also have a blog where we write about multiple mental health subjects. If you’re interested in learning more about us here at Brave Minds Psychological Services, please reach out at our Scotch Plains and Branchburg counseling offices!
