FEAR

Featured Blogger Kaylee Page

Featured Blogger Kaylee Page

She’s growing on Nutramigen, so that’s good, right?
I mean, good enough….right?
Why try milk?
Why ever try it!
Nutramigen is enough.
Right?

My train of thought chugged, huffed and puffed these words over and over for weeks—even months. There was nearly nothing that would convince me to try cow’s milk again. Not my husband. Not the doctor. Not the fact that she had reached the age when many start outgrowing FPIES. Not even our pending bill from the formula company!

Bella first exposure to milk led her to vomit seven times over 90 minutes. I knew if we tried milk again, we risked the possibility of a much more severe FPIES reaction like we’d had with soy.

fearFear is a reality of FPIES, isn’t it? We fear a repeat of that worst reaction. We fear we’re not reading the symptoms right. We fear we’re going too fast or too slow. We fear what can happen when we’re not around. We fear we’re not doing enough.  We can run, hide and try to mask it but there is a huge part of FPIES that is completely out of our control. And the unknown can be terrifically petrifying.

So what can we do? We try really hard to control what we can control…and keep these points in mind:

Embrace and Face Past Fails
I gave her soy…We didn’t have an FPIES diagnosis yet, just a good hunch that she had issues with milk protein. That’s why she was put on Nutramigen at 8 weeks of age. In the months to come, our pediatrician said to try a soy-based formula first before a dairy-based formula. So I did. I gave my daughter soy. She didn’t like it. She winced and turned from the bottle. I stubbornly made her drink two ounces. Two hours later, seven ER nurses and one ER doctor surrounded my daughter. I sat at her bedside, shaking and shocked.

I gave it to her. And I never wanted to be the one that gave her a trigger again. Better yet, I never wanted to see her that lifeless again.

Every time we introduced a new food, I’d tremble with fear. Even foods less likely to cause an FPIES reaction gave me fear. Because tucked in the deepest part of me was that image of my daughter in that hospital bed.

As a FPIES parent, we are constantly experiencing (and replaying in our minds) the trauma of FPIES. It can be easy to let the fear keep us from introducing any new foods. But it can also be exhausting to carry and suppress that amount of trauma. It’s not an easy thing for people to relate to; it can feel really lonely and hard to even to talk about. If you do talk about it, and nobody gets it, it leaves you feeling more disconnected and questioning whether the fear is real or legit. Fear is a very real part of FPIES and so is the trauma that led to that fear. Acknowledge those fears and past fails; don’t hide or bury them.  This will help you face the trials to come rooted in the reality of FPIES but not overcome by it.

A Food Fail Does Not Equal a Parenting Fail
Somewhere along the journey of FPIES, I internalized it. I took responsibility for it all. I was convinced that if Bella failed milk (or any food I gave her), then I had failed her.

You, me, we…are navigating a really difficult, muddy and confusing path. If a food is challenged and failed; it is a failed food challenge—not a parental failure. You have not failed anyone. In fact, you have succeeded.  How so? By doing your very best to care for your child. By making hard decisions on behalf of your child. You have successfully navigated one more step in the journey, yes? Let that be your focus. Let that be enough.

There’s Fear, and Then There’s FEAR

It’s okay to be scared.
Being scared means you’re about to do something
really, really brave.
– Mandy Hale

Fear is a pretty all-encompassing word for how we feel about the unknown and unpredictable parts of our lives. But not all fear is the same. Some fear is irrational and paralyzes us. Some fear is helpful and keeps us from danger. Some fear is rooted in the all-too-familiar, while other fear is rooted in the completely new and uncertain.

Sometimes I wondered if I was strong enough, if I could just pull it together, then I wouldn’t have the anxiety or fear. At restaurants or playgrounds or anywhere food was present, I found myself wiping and cleaning constantly. I assumed people thought I was weird. Maybe I was a little extreme (I’ll give ‘em that!). The truth was, I really didn’t know if there were crumbs of food on Bella’s hands…or shirt…or seat…or table—or what that would do to her.

My experience as a parent, and that need to protect my child vigilantly, was not something most moms I chatted with could relate to. And yet, I somehow expected them to understand, and worse, I allowed myself to be ashamed of those feelings.

When we’re talking about this kind of fear, this fear of FPIES, it’s a deep-rooted concern for the well-being of our child. That kind of fear is okay. You are not weird or weak. You are concerned. And it takes a strong and courageous parent to take that fear and choose to face it head on and charge forward with new foods and challenges.

So when it comes time to trying that new food or retrying that old trigger, remember, the fear—the concern you have—is just because you are about to do something really, really brave!

Featured blogger Kaylee Page shares her perspective on life with FPIES in an ongoing series. Click here to read her previous posts.

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!

Feeding Your FPIES Baby — Where to Start?

Feeding FPIES BabyFor many parents, an FPIES diagnosis is received with a sense of relief; finally, there is a word to describe the source of all the fear and confusion. But with the word FPIES also comes a flood of questions, many pertaining to diet. What foods do I start with? How do I trial foods safely? Who can help to figure it out?

These and other questions are addressed in The First Nutritional Guidelines for FPIES developed by IAFFPE’s Advisory Dietitians Marion Groetch, MS, RD, CDN; Carina Venter, PhD, RD; and Brittany Hofmeister, RD. This piece discusses breastmilk and formula, feeding and developmental needs, what solids to trial, and offers helpful feeding tips and ideas for introducing different textures.

We also interviewed Dr. Carina Venter on this subject for our latest FoodPrints newsletter. She is currently a Senior Research Fellow at the University of Portsmouth, where she is doing a Post Doc in the area of Food Hypersensitivity (FHS). She also works as a Senior Dietitian at The David Hide Asthma and Allergy Research Centre where she sees adult and pediatric patients and takes part in research.Karina Venter IAFFPE

What led you to your interest and specialization in FPIES?
I am based in a primary care, secondary care centre. We see FPIES cases at first presentation, refer them for diagnosis to tertiary care centres and look after them jointly with the specialist centre. I think what fuelled my particular interest in FPIES more than 10 years ago now was the lack of information on how to look after the nutritional intake of these children and which foods they can tolerate.

What developments are you excited to see come from IAFFPE?
It is great to see the interest of other medical professionals in the field. The information in the FoodPrints newsletter is also very exciting – I particularly enjoyed reading the cases presented by Dr Scott Sicherer in the Spring 2012 edition as not many people had the opportunity to attend his session at AAAAI 2012.

What changes are you passionate about for FPIES patients?
As I am based in the UK, my passion lies in educating primary care-based healthcare professionals such as GPs, Dietitians, Health Visitors and Nurses to become aware of FPIES and the fact that it often presents with the introduction of so-called low allergenic foods such as rice and oats.

How can seeing a dietitian help assist an FPIES patient?
Dietitians play a very important role in choosing the most appropriate formula for the child, monitoring their growth, ensuring adequate nutritional intake and helping these children reach their food texture milestones.

What are the most commonly introduced safe foods for a child with FPIES?
As we mentioned in the nutritional guidelines piece [Fall 2012 FoodPrints], children with cow’s milk or soy FPIES have a greater chance of developing FPIES to other foods, particularly grains. We therefore often recommend the introduction of yellow fruits and vegetables before introducing grains. Tolerating one food from a food group, often indicates that other foods from the same group will be tolerated safely (i.e., if oats are tolerated than other grains such as barley and wheat are likely to be tolerated, in most cases).

What creative tips can you offer for a patient with a limited diet and few safe foods?
I think the most important tip I can give is to ask for a referral to a dietitian with an interest in FPIES – or even just a dietitian with an understanding of feeding difficulties. Parents are often surprised about the fact that a healthy diet, with a variety of textures, can be provided based on a very limited number of foods!

Nutritionally, what should a parent of an FPIES child be most concerned about and what would indicate a nutritional concern?
Our “gold standard” for indicating nutritional concern is the infant’s growth chart. Monitoring the infants’ growth and regular review of dietary intake by a dietitian should indicate if there are any nutritional concerns, which could be further investigated with appropriate blood tests.