FPIES Update

It’s March? My baby is almost 9 months old? HOWWWW does this happen time and time again?! I wanted to come on here quickly (because I can never find the time to write) and update everyone on our progress.

Since our initial diagnosis and acute event with oats, she was put on “gut rest” until about the middle of January. We got the OK to begin food trialing at home. She has been passing everything so well! Bananas, Pears, Peaches, Apples…I have tried Pumpkin and a few other veggies however she is determined she will NOT eat those. Being an 8 month old however, she really wanted some finger foods to eat on her own. Rice is a big FPIES trigger so I have been avoiding anything with rice flour- which would be ALL the baby finger foods 😦 puffs, mum mums etc. I did find Quinoa squares that are banana and broccoli. She LOVES THEM. Chalked this up to a great find as they are nutritious and she has not had a reaction to them.

We started to wonder if little girl even had this so called FPIES. Though her initial reaction was pretty darn ‘text book’ she hadn’t been having any reactions to anything else? I had assumed she was clear on broccoli because she was getting it in the quinoa bites every day. I found an organic baby food pouch that had only apples and broccoli in it so I ASSumed it was safe, and treated it like a passed trial food. Last night was her second night eating it and she went crazy eating almost 2 entire pouches! She was bathed, nursed and went to bed.

BOOM .

When you wake up to your baby screaming at night it startles you. When you go in to find her drenched in her vomit and crying, you want to break down and cry. She wouldn’t open her eyes, she was just crying into my chest. Of course I turned on the light and woke my husband up. The wonderful world of FPIES is so. damn. frustrating.

“Is it the Broccoli?”

“Did she eat too much?”

“She doesn’t seem in pain, is this an FPIES reaction?”

All she wanted was to nurse so I nursed her and rocked her and she fell back asleep fairly quickly. Still covered in green vomit. She had no stomach pains, no more vomiting, peacefully sleeping in my arms. Her body temperature did seem rather cold but she was OK. She ended up sleeping VERY well the rest of the night even for her!

This morning I am left with SO MANY freaking questions. Was it Broccoli? Do I stop the pouches? Do I stop the quinoa squares even though she has never reacted to them? I am thankful for her allergy Dr. whom I can message all these questions too. However, there is NO ONE who can really give me a definitive answer. There is no blood test that can show me what she will react to, there is NO list of magically foods that will trigger her or not.

It definitely gave me a quick slap in the face though. Because she has been doing so well I got careless. I started experimenting with what I thought would be safe and it didn’t end well. Back to being crazy careful, cautious and obsessive with her.

Thank you to EVERYONE who reached out to me after my last post. I seriously was overwhelmed with the love and support I got from family, friends and STRANGERS! It helps knowing I live in a community where I can grow and learn from other moms.

On a happier note, Em is now full blown crawling. Which means a training course for the other kiddos in the house who LOVE to leave very small things on the floor all the time! She is cutting her bottom two teeth at the moment and is absolutely so much fun. We will continue food trialing and I will update again around her 1 year mark when we do dairy and oat in hospital trials! Thank you again guys, really truly thank you!

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our sweet Emilia.

Hi. My name is Alison and I have FOUR kids now 🙂

I hadn’t logged on to WordPress since my last post 2 years ago almost. Time has flown and we have been blessed with yet another amazing child. Our fourth, and final babe was born in June of 2017.

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Emilia Elizabeth. A perfect 8.3 pounds. She came on her due date and came out with a wink and smile, showing off her adorable dimple. A red head I might add. Four kids and the only ginger. I sat there counting fingers and toes the night she was born. Like every other one of my babies. Thanking God for their perfect little bodies and health. I wondered like most mothers how I could get so lucky. What I would do If something were wrong. Surely I wouldn’t be able to handle it. Surely I was given healthy children because I wasn’t capable of the emotional side effects of a non healthy child. I will forever praise my in-laws for their parenting, personal, marital coping skills while going through my husbands Cancer when he was 10. I still will never be able to understand the level of anxiety, fear, love that they dealt with on a daily basis. The mind block and ,mind SET you have to have. Compartmentalizing your life just to get through a day. All of this brings me to today. What compelled me to write a blog post after nearly 2 years?

My husband and I used to joke around when I was pregnant and say how calm, easy and “go-with-the-flow” she would be. She was a fourth child, there for she would have to be easy. We thought. We imagined her personality being sweet, calm, quiet, friendly, everyone’s friend. When we picked her name, we even found a website that listed those same qualities. We knew it would fit. She would be the light in the room. Make everyone happy and be a lover. When she was born she fit right into our expectations. I wasn’t expecting her fiery red hair..that was new 🙂 Having my last baby never sleep, ever, I was delighted to have her start sleeping 5-6 hours the night we brought her home. She really was our perfect little baby. That was until week 2. Colic set in. Or so we thought. Whatever Colic may be, Doctors don’t really even know. She was screaming, SCREAMING bloody murder far more than the text book 3 hours, 3 days a week for 3 weeks. It was an all day event. We literally couldn’t leave our house. She would scream in the car, she would scream wherever we were. No consoling. I had 3 other kids on summer break and we couldn’t leave our home. The first 3 months of her life were absolutely exhausting. I couldn’t find the good in anything. I was exhausted, bitter, angry, short tempered and not myself. It was hard to see who she was or who she was becoming because it was masked by crying and neediness. This breaks my heart. Knowing what I know now, looking back. My sweet baby had no other way of communicating what was wrong or how she was feeling. My oldest, who is now 11, had a milk protein allergy as a baby. He couldn’t handle my breast milk and by age 6 months I switched him to Neutramagin and he was 100% improved. Colic gone, pooping normal. Happy baby. At age 1 year he was successfully on whole milk. Emilia was sensitive to everything. Everything made her gassy, she started only pooping once every 7-10 days. I took her to 3 pediatricians. I ended up educating 2 of them on things I had tried that even they didn’t know of. I felt hopeless and frustrated. I was offered no help. If another doctor told me “Oh, they are babies and they cry. Colic sure isn’t fun” I was going to punch them. My baby was in pain and I couldn’t help her. Our parents wouldn’t watch her because they were scared of her. She refused a bottle and screamed. WHO would want to?

Slowly as 3 months approached we began to notice some improvements in her crying. It wasn’t ALL day. She was still extremely needy, but not as colicky. I tried cutting out some known items from my diet for breastfeeding but honestly couldn’t tell a difference. I decided I was DONE breastfeeding since I had basically been doing it for 3.5 years now and tried formula. NOPE.  She wouldn’t even get a drop in her mouth. 6 bottles, 3 different formulas. NOPE. So that was out. She was gaining weight normally and starting to get happier. We got a referral to a GI specialist and was put on an appointment list for 6 months from then.

And then it became time to try out solids. She was 5.5 months. It was my moms birthday dinner at home and we were so excited to try out Organic baby oatmeal. Not sure why I tried that instead of Rice cereal..but it looked good. Instead of thawing out some of my breast milk I thought it would be easier to use  some Neutramagin formula to mix with it since it was in the cupboard. Hopefully fill her little tummy up some more. (Note- she had stopped sleeping good at 3 months. She now sleeps in hour increments cue eye roll.) We all sat down, put her in her high chair and she ate like a champ! She loved it. Thank goodness. I was so happy she was actually showing interest in food. She hadn’t up until then. She ate quite a large portion of the oatmeal mixture I made. After dinner we did bath time like usual, pj’s, nursed and then off to bed. At this point she was sleeping about 3 hours initially and then up every hour or so the rest of the night. Usually screaming from stomach pain, gas and farting. I usually have to massage her belly in the middle of the night. After she had been asleep exactly ONE hour after I put her down I saw her squirming and crying. I was so frustrated. I went in and put the bink back in and walked out. She continued to stir and cry. It had been EXACTLY 2 hours since she ate. my husband and I laid down to go to bed when I heard her choke. I got up immediately (she is still in our room) and started panicking. She was vomiting HEAVILY. I flipped her over and patted her back as she threw up all the oatmeal. Covered the entire crib. It didn’t stop. She kept heaving. Her eyes would bug out and she was struggling to heave and throw up. It was not baby spit up, it was not projectile vomiting. It was full on adult style vomiting. I panicked and switched the light on and ran to the bathroom. My mom was in the living room sleeping and we all huddled around her in the bathroom. She was exhausted and scared. She had no fever, I knew it wasn’t the flu. She hadn’t been exposed. No one else was sick. I thought of the oatmeal. I knew it had to be something with that. She continued to vomit every 10 minutes for 4 hours. All that was left was Bile. We almost went to the ER. She became cold, lethargic and almost non responsive. Being my fourth kid I didn’t want to run to the ER for no reason or be “that” mom. I should have. She slept that night on my chest as I was TERRIFIED. In my life I had never heard of nor seen a baby throw up that way. I was on my phone all night googling.

6 month old. Oatmeal. Vomiting. Surely something or someone has blogged about this. And I was right. Here began our F.P.I.E.S journey.

I had never heard of this before. I began reading a blog post that sounded exactly like the one you are reading. I thought “OMG this is my child” I read the bit about the first FPIES reaction. It was what happened to Emilia. I knew it. Everything I read further and further seemed so spot on.

FPIES (pronounced: F-pies) is a severe delayed food allergy reaction in the gastrointestinal system (the gut), it is understood to be a T-cell mediated (Non-IgE immune) response in which food is considered a toxin to the body.

Shock. What I didn’t know what was happening to my tiny baby at that time, was that she was going into shock. Her body thinks any and all food/milk protein is a toxin and rejects it. She vomits until she goes into shock with lethargy, low blood pressure and body temperature and unresponsiveness

I called her pediatrician the next morning and left a message stating what had happened. She wanted to get an upper GI. She immediately was thinking a block in her upper GI. Again, don’t ask me how, I knew this wasn’t the case. I couldn’t explain the type of traumatic vomiting that she had done to anyone. They assumed threw up once and done. I researched pediatric GI clinic in our area to try and get in sooner. I got in to a ARNP at a local PGI. I went in, explained “my story” he listened. I brought up FPIES. He had never heard of it before. He googled it and said he was 90% sure she didn’t have that. I trusted what he thought and said and let it go. He ordered a Celiac panel and food allergy testing. I sat there and restrained my 6 month old while they poked around to find a tiny vein. They weren’t able to get “enough” out for the food allergy tests so I would have to go back. A week went by and they wouldn’t give me results of the Celiac on the phone. As nice as the ARNP was, I didn’t feel he was knowledgeable enough to treat my baby. I scheduled with the Doctor. He had 20 plus years at Marybridge Hospital as a Pediatric GI Dr. I explained “my story” again. Though, this time I did not tell him that I thought it was FPIES. He kept smiling at me as I spoke. I stopped and apologized for having an hour long story of my child’s life. I was desperate for someone to understand. For someone to tell me what was wrong with my child.  He could tell. He said ” I know exactly what is wrong with your daughter.” He said is so matter of fact. I said “YOU DO?”

“Your daughter has FPIES.” I started cry laughing and said how I had come to that conclusion myself. I was crying because I was so incredibly happy to have a diagnosis. I was soooooo happy to hear someone knew what was wrong. Because that’s the first step. I had to immediately stop all foods for her. Nothing. Not a single thing other than my own breast milk. I had to eliminate all top 8 allergies form my own diet. No Dairy, no eggs, nuts, soy. Literally nothing. I went home and researched the CRAP out of it. I started crying again. It wasn’t good. Not a good thing at all. There are support groups for this specific syndrome. My anxiety grew by the second until I put down my phone and just stopped.

Another annoying fact about my husband and I. We used to joke around about kids with food allergies. We had never experienced it in our lives before. We would get frustrated when a note was sent home for one of the kids classes that they couldn’t have nuts in their class. We thought it was a lifestyle choice their parents were choosing for them, not a life or death situation. It was an inconvenience in our lives. I am so sorry mommas. I apologize for my naivety. My own daughter cannot eat. Like, she can’t have anything or she might go into shock. We have to start food trials in a couple weeks with her allergist. I fear I might need Xanax to get through them. We trial one specific food for 9 days. If she passes it is considered a “safe” food. She will/can have a vomit to shock reaction from any of the foods in which we will have to go straight to the ER. The fear of Failure to Thrive is very near to us now as she can’t have anything other than breast milk. She cannot have formula either. She can have a special kind called Neocate and that’s running $50 a can. If she will take it.

Now that I have eliminated everything from my diet, literally, she is HAPPY. No more massaging her tummy in the middle of the night. No more gas. She still doesn’t sleep, still doesn’t poop normal but her personality is what we projected on her those 6 months ago. She is hilarious, smart, so funny and so feisty. There are still days she breaks out into a full body rash. I go crazy trying to figure out what I ate that gave her a reaction. I will never know. But we know what’s going on, we know the steps to take to start this long, exhausting, scary journey.

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I have only told close family and friends about our discovery. I didn’t want to be “that” mom that was over sharing about their child’s food allergies. I finally got over myself and realized that by writing this..I could help another mom googling at 2 am trying to figure out what is wrong with their child. I could post this on my personal facebook and MAYBE a friend has experience with this and could help. I am spreading the word about FPIES because it’s terrifying and not well known. In the meantime Emilia is currently lighting up every room, making people laugh, smiling from ear to ear. She truly has brought SO MUCH INCREDIBLE joy to my family. She is the little being we didn’t know we needed and I am so so happy she is ours.

 

If you made it to the end of this blog thank you. From the bottom of my “momma” heart thank you.

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