Our FPIES life

Unless you live in a bubble, you’re probably aware of the fact that allergies are on the rise.  I feel like I didn’t know very many kids with peanut allergies, etc. when I was a kid.  Now, at my son’s school there is a “contains peanuts” container for lunch boxes and a “peanut-free” container.  Allergies are running rampant, and as a mother– my children having allergies has always been a huge fear!

When my son was born I introduced foods so slowly.  I closely monitored for any reactions.  I was a complete and total nervous wreck when giving my son peanut butter for the first time.  Thankfully, he was fine.  He showed no obvious signs of food allergies.  When my daughter was born nearly 3 years later, I was much more relaxed about introducing foods. She was a healthy 8 lb 10 oz and around 4 months it seemed that her formula just wasn’t satisfying her anymore!  My doctor suggested introducing a baby cereal.

In July of 2016 I introduced a little bit of Gerber oatmeal cereal mixed with formula.  She loved it and then took a 2 hour nap.  We were happy that she seemed full and satisfied.  When my daughter woke up she was screaming to the top of her lungs.  She seemed miserable.  We made her a bottle and she guzzled it!  Within minutes she was vomiting it back up all over the floor.  She continued to vomit for the next half hour.   We called the ER and they told us she probably had a virus.  We were told to give her pedialyte for the rest of the night.  She seemed much better with no more vomiting incidents.

Fast forward a few weeks, we were at my parent’s house visiting.  My daughter was wanting to eat every 2 hours.  My mom encouraged trying the cereal again.  I tried it, she loved it… she napped.  Two to two and a half hours later she woke up screaming.  I fixed a bottle and her aunt fed her.  She immediately vomited all over my sister in law.  I knew it was the cereal at this point.  I panicked.  I knew she would continue to vomit so I got her to a trash can.  The vomiting was violent so I handed her to my sister-in-law so I could call the ER doctor. She encouraged me to call 911.  At 4 months old my daughter took her first (and I pray, her last) ambulance ride.  In the ambulance she was extremely lethargic.  I knew something wasn’t right.

We arrived at the hospital and she was asleep.  Her vitals looked okay.  They attempted for hours to draw blood and failed miserably.  (Unfortunately this ER was lacking in the skills needed to properly handle an emergency situation with an infant) They didn’t know how to draw blood from a baby her age.  We were there until 4 in the morning and I was told she probably just had a sensitivity to whatever she ate.  I was frustrated and scared.  We had no answers.

I took her to her regular pediatrician and he said that she possibly had a sensitivity as well and to just try something else.  I knew it was something more.  My friend, Emily, had mentioned to me something called FPIES when we were in the hospital.  Food Protein Induced Enterocolitis Syndrome.  I decided to take my daughter to a pediatric gastroenterologist and pediatric allergist to rule this out.

Unfortunately, it was indeed FPIES.  She had all of the symptoms.  Even down to the mucus/bloody stools she’d had after introducing “regular” formula.  She did okay with hypoallergenic formula.  I remember hearing the word FPIES for the first time and just breaking down.  I felt like a failure as a mother.  I sobbed as I asked her pediatric allergist, “is this my fault?”  Maybe it was all the chips a hoy I ate when I was pregnant.  Maybe it was because I had to stop breastfeeding.  Maybe it was this, maybe it was that.  I couldn’t stop the blame game.  I was sick with worry.  I stared at my beautiful little girl lying there, smiling and as happy as can be… and just broke down completely.

Through the tears, the doctor explained our plan of action.  We would avoid solid food for a few more months and stay on <a href=”http://Nutramigen “>Nutramigen since she was tolerating it well.  Then we would slowly introduce foods.  We had to do fruits and vegetables to begin with and if we passed those… we would move on to other food groups.  He explained that we would want to avoid legumes, grains, dairy and meats.  I remember trying so hard to process everything he was saying and just being lost in my own head.   I didn’t want to hear it.  I just wanted everything to be “normal.”  I wanted to feed her a little taste of bread, or ice cream or anything!  I was terrified that something wouldn’t go okay and she would be back in the hospital.  The fear was paralyzing.

I decided not to introduce solids again until my daughter was 8 months.  I was scared and needed time.  I needed to emotionally prepare myself.  We started with squash.  She passed.  We then tried apples, bananas, avocado, blueberries, zucchini, etc.  They were ALL passes!  I prayed and begged others to pray and I got through it.  She got through it and she LOVED (loves) eating!

One thing that has been such a blessing throughout this whole FPIES journey is that my daughter has never been failure to thrive.   Many children with FPIES are failure to thrive and I’m sure that is even scarier.  Claire has always been an excellent eater and, like my son, is a very chunky, healthy baby!  She has stayed at the 99th percentile for weight/height for so long!

At 1 year old my daughter got a traditional allergy test as many children with FPIES have traditional allergies as well.  Thankfully she was not “traditionally” allergic to anything they tested.   She also passed her “chicken challenge. ”  We were so thankful.  This opened up a new food group for our daughter and now she has had chicken, fish, pork, and turkey.  We also got the clear to introduce legumes and even some yogurt.  We are currently working on getting her to whole milk!

At the end of the month we will try corn.  I am praying that we have good results with this challenge as well.  I hope to be able to feed my daughter a wider variety of foods!  Thankfully, with FPIES, most children grow out of the allergy with time.

In the meantime, we have an emergency response plan for accidental ingestion of a trigger food.  We go to the nearest ER and immediately begin fluids.  We call her on call pediatric allergist and he will consult with the ER physician.

For all the FPIES mamas out there, I know your struggle!  I know the fear.  I know the frustration in trying to find recipes your little one can eat!  It is HARD.  Feel free to reach out here/Instagram/Facebook/or email.   I would love to hear your story.  For everyone else, here is a little run down of what FPIES is!

Food Protein Induced Enterocolitis Syndrome (A general run down)

• FPIES is a rare, non-traditional allergy syndrome.  It affects the GI tract.
• It does not show up on traditional allergy tests.
• It is typically diagnosed in the first few months of life, a bit longer for exclusively breastfed babies.
• Typical triggers are dairy, soy, and grains but can also be chicken, peas, green beans, etc.
• Children typically show symptoms 2-3 hours after ingesting the problem food.
• Symptoms of FPIES can include intense vomiting, drops in blood pressure, dehydration, lethargy, body temperature changes, diarrhea, etc.
• The best course of action is to go to an ER immediately and talk with a doctor about an action plan.  Some doctors are unaware of FPIES and don’t know the proper procedures.
• Many children grow out of the allergy by the age of 5.

FPIES Support

• FPIES Support – Facebook
• I-FPIES Support Groups
• The FPIES Foundation
• The Mighty – Personal FPIES Stories

 

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