Hey allergy minded friends. I hope this week finds you warm, well, and reaction-free! Here in our little FPIES world we’re feeling oh so grateful to be all of the above. Today I’m going to share another amazing FPIES superhero story with you! Meet Nadine. She’s a mama who’s been through a premature baby who cried in pain 23 hours a day, months of breastfeeding on a 9 food diet, and an 18 month journey to an FPIES diagnosis! Her little love, Jorie, is such a fighter. Read on to her how she’s advocated and fought for the health care and support her kiddo needs…and look at that sweet smile now!
First of all, introduce yourself!
My name is Nadine. I’m a 34 year old wife and mother of two daughters. I have a 1.5 year old FPIES baby and an 8 year old I became a mother to when I married her dad. We live in very rural Maine where the snow apparently is never going to stop!
I gave birth to Jorie, my FPIES child, at the hospital I work in. She was born at 34wks 5 days on August 30th because I suffered a placental abruption. This was very traumatic for our family. She was too little and her lungs and kidneys were underdeveloped. She had to be air lifted to the closest NICU, 3 hours by car. They didn’t have a bed for me so they left me behind, and my husband drove straight down to be with her. I checked myself out of the hospital 36 hours later and rode down to the NICU with my mom. We were there 16 days and then we got to bring her home!
How and when was your little one diagnosed with FPIES?
The process for us was long and frustrating. Our FPIES diagnosis did not come right away.
Jorie had a lot of issues breast feeding from the time we got home from the NICU and I was very concerned about them. She’d cry 23 hours a day, never slept for more than an hour or two, and she spit up large amounts. I was a first time baby mom and didn’t know to look for things like mucus and blood in her diaper. Every time I brought it up to our pediatrician they’d tell me I was a new mom, babies cry, she most likely had reflux, etc.
We also had a NICU doctor and I asked that doctor to make a referral to see a GI because our pediatrician was less than helpful, and they did. While we were waiting to see the GI I used google and found dairy intolerance in babies had the same symptoms so I cut dairy at 3 months. We got in to see the GI at 5 months and she told me to cut soy. At four weeks soy free I did a modified Total Elimination Diet (TED) where I ate her safe foods not pureed and chicken. (Banana, avocado, sweet potato, squash, potatoes, apples, carrot and peas) After that the crying and spitting up stopped for the most part. Our working diagnosis was Milk and Soy Protein Intolerance and reflux.
During this diet we also switched pediatricians. Our new pediatrician was great. He told us that we could trial dairy around 1. So at 11 months we started step one of the dairy ladder, baked in, ¼ cup milk in 24 blueberry type muffins with only safe ingredients (as far as we knew at the time). She started projectile vomiting on day 3 when we gave her 1 whole cookie. (For those doing the math, that is ¼ a teaspoon of baked milk per cookie.)
I then started calling her GI back, saying:
“This is more than a soy and dairy intolerance, this is terrifying!
What are the next steps?”
While waiting to hear back from the GI we got a referral to a Maine allergist. The GI got back to us and at 13 months old Jorie had an endoscopy and they found nothing, including no reflux damage at all.
Now the GI agreed with me- this was not reflux, so we took her off the medications. I had found the FPIES support group on facebook and asked the GI about this. She told me it couldn’t be FPIES because that only happens with rice and oats. We left with no answers but I still had my suspicion that it was FPIES from what I was studying.
We went to see her allergist 2 weeks later. This doctor brought up FPIES before I could but also said that he was hesitant to diagnose it because (1) he didn’t treat it and (2) she had too many triggers for it to be FPIES. He did know soy and diary were triggers though. The allergist said seeing a specialist was a good idea and to do 8 weeks of gut rest. We used this suspected FPIES diagnosis in his doctors note to get a referral to the closest FPIES specialist, 8 hours away, in Boston, MA. We also did 8 weeks of gut rest and finally reached baseline for the first time.
We saw Jorie’s FPIES specialist at Boston Children’s Hospital and got her official FPIES diagnosis just short of a year and a half on 1/22/2019.
What are her triggers?
Acute: Soy, prunes, dairy, wheat.
Chronic: rice, beef, pork, poultry
What has been the hardest part of coping with FPIES? What has been the most rewarding? Any silver linings to share?
The hardest part about coping with FPIES at first was no one believing me. Now it’s the anxiety and fear that sit in my chest every day waiting for her to have a reaction or fail another food.
The most rewarding thing has got to be her hitting baseline and hearing that real laugh for the first time. She was late to smile and laugh. I called her my serious baby, but in hindsight I think it’s because she was in pain.
We all worked so hard to get her to this point and she is the happiest toddler!
Another great thing is that we were told by our nutritionist that she is the healthiest baby because she doesn’t eat much in the way of processed foods or foods with added sugar. We also have lots of safe fruits and have never failed a vegetable. She’s our vegan baby and we all have a healthier diet because of her.
A silver lining to being on an FPIES diet and wanting to breastfeed is I’ve lost 56 pounds. I’m actually smaller than I was before I got pregnant, down from a size 16 to a size 10.
How does FPIES affect your daily life?
Of course the diet changes had a big impact. It takes me 2 hours to grocery shop and I have to go to three stores to get all our safe foods. I also do food prep for both of us on the weekends so she has food for daycare and I have food for work. There is no fast food options when you have FPIES and there’s not an option in the hospital cafeteria for me!
I’m terrified to take her anywhere there might be food I didn’t prepare.
Our family has been pretty good about it especially as we got more information but how can you not still worry? Everything, everything has soy- crayons, ink in the cardboard book pages, dog food… so we’re always on the hunt for items that no one would think to put up that she can put in her mouth. A recent example would be our annual Christmas party. There were plates of food left sitting on chairs and end tables within her reach and kids dropping crumbs and eating everywhere not a designated room. She walks now so we can’t just strap her in a highchair or carry her. I brought her safe treats, two dozen specialty cupcakes and cookies, enough to share if someone else wanted to try them. Then someone set a knife from a pudding dairy dish on the dish of her safes. We ended up throwing the plate of about 20 specialty cupcakes. We were going to take the leftovers home for her to have a treat, so it was disappointing we spent that much money to throw them out, but we couldn’t take the risk!
We document and research everything, everyday.
What she eats, when she eats, when she poops, food trials, new research, medical journals, articles, blogs. If it has FPIES in the title we have looked at it.
The waiting for a reaction or a mistake to be made is also a daily occurrence. That anxiety never leaves even if you’re with them, you don’t know what was given to them two hours ago or what she could have found on the floor.
I’m exhausted. Not just from the worry and anxiety and work I put into keeping her safe but also I get up with her a lot at night. We get a lot of “helpful” advice about sleep training but you can’t sleep train through stomach pain. She’s not going to cry it out, she’s just going to cry. She’s never slept through the night but at baseline she only wakes up once or twice. This makes trialing new foods tricky because I still have to work and might be doing so on no sleep.
What have you learned about yourself and your little one in this journey?
I will do anything for my daughter.
I am her strongest advocate and it is my life’s mission to make sure she is happy and healthy. I didn’t know how special regular moments would be, things like: she can eat oranges! Look at her using a spoon to eat tomato soup, sitting at a table at daycare, bringing us something she found on the floor instead of putting it in her mouth.
What do you wish everyone knew about FPIES?
To be kind to our FPIES family: give us the benefit of the doubt for not coming to visit more or for not attending a birthday party. To be supportive too… like most parenting choices, you don’t have to agree or believe in what we’re telling you but you do have to respect our choices. You don’t have to believe my kid has a dairy issue but you also cannot feed her a cheese stick.
All FPIES cases are different. Some babies do outgrow it by 3, but not all. Some kids only have one or two triggers, some have more. Some have lots of safes, some have a handful. Some moms see reactions through breast milk, some moms don’t. There’s so little really known about FPIES and each mom has a different story and each doctor has a different method. We’re all just figuring it out!
Finally, this is our lives now. We can’t answer the “when” questions because we don’t know. When will she outgrow it? When will you stop breastfeeding so you can eat normally again? When will you come visit? When will she sleep through the night? When will you be comfortable leaving her alone with a sitter? I don’t know.
I’m just happy that today I have a healthy, smiling little girl and that we’ve figured out a way to manage it. Please live in this moment with us and helps keep her safe, healthy, and smiling!
If I wrote down all the parts of this post I found relatable, I’d pretty much just have to rewrite it all again! From doctors calling our crying babies “colicky” and denying any real issues, to the anxiety over leaving the house, to the sadness of contaminated safe foods, I know you allergy mamas can hear Nadine and Jorie loud and clear. Thank you for reading her story, for sharing your time with me, and for being a part of all our food allergy journeys. Wishing you all the best this Tuesday, and every Tuesday.