FPIES à La Mode

Oh, starting solids. This is supposed to be a fun time of watching babies make funny faces to foods they have never tasted before and creating a diet for babe that may resemble yours. Giving your babe a little tiny taste off your plate while you are eating dinner at home or at a restaurant, this is supposed to be fun. 

So you try the ever so basic rice cereal for the first time. You get the funny face and babe eats some of the extremely “watered” down rice cereal you made and you feel like you have the start of something great. Maybe even your first night if sleeping through the night!

Fast forward about 2 hours later, babe is sleeping in his crib. You have heard him cough little coughs but he has been doing that all day so he might be coming down with something. You pump and go to bed, your husband checks on babe and calls you into babe’s room. He is covered in vomit and continues to vomit. You pick him up; he is limp-ish, grey, cool and lethargic. You panic. You call the after hours pediatrician phone number and make an appointment for the next day because he has vomited more than 2 times in 24 hours – he just vomited 4 times in the past 1 hour. The nurse doesn’t say anything about the other symptoms you explained, this is odd right?! After about an hour and a half, babe “snaps” out of it and seems to be fine. He sleeps fine the rest of the night and eats a bottle like normal. You don’t sleep a wink and check on him every 10 minutes. What the hell just happened?!

At your appointment, they look him over. It’s a virus they say. Keep him home from daycare they say. Try cereal again they say. You wait until his 6 month check up, it is only 1 week away.

Fast forward one week, you discuss with your pediatrician because you didn’t get to see yours at his appointment the other day, it was too short of notice. She says it sounds like he did just have a virus, he appears to be great right now. Go ahead and try the rice cereal again, oh and he should be sleeping through the night now. Six month old babies should have no issue, you need to stop his middle of the night feedings. My reaction – LOL, uh no, but we will try the cereal again.

That night you do it all over again, extremely “watered” down rice cereal. Babe isn’t having it but you manage to get a bite or two in. You get him in the bath about 2 hours later and it happens again. Vomiting. Lethargy. Grey in color (I learned this is called pallor). Chilled. You call the doctor again, explain this whole scenario again. The nurses reaction this time, “well that’s not normal, let me call your doctor.” While you wait for the nurse to call back, you start to Google things. Normally, this would be a bad idea but your gut tells you that you aren’t going to get an answer from your pediatrician. You find babe’s exact symptoms…EXACT. Your pediatrician makes you an appointment with a GI doc in her practice and this is where your journey begins.

My husband went to the GI doctor appointment without me. This was a choice we made together. My PTO was slim due to the fact I had to use the majority of it when I gave birth to babe. I sent him with a list of questions, all of these questions had to do with this thing I found called FPIES (Food Protein-Induced Enterocolitis Syndrome). I only knew what I had read about it but, in a nutshell it is an allergy/intolerance to the proteins that make up food. Everything I had read in this short amount of time said there is not any test that can be done for this, this is not your standard allergy that you can just test for and have results. The GI appointment was pretty much pointless and he didn’t really give a whole lot of answers other than, “yes, it sounds like babe may have FPIES. You need to get an upper GI test done aka swallow study.”

I took babe to his swallow study with my mom in tow for support. The doctors and nurses were all very nice and helpful and babe was a champ, well until he had to drink the bottle of barium. That was not successful. He drank enough to get results but not enough to get results on acid reflux. Big whoop – we already know he has acid reflux ,he is on medication for it, I am not worried about that.

Next we spoke with our pediatrician, she saw the results of the swallow study and between her and the GI doc, she recommended we go see an allergist. So away we went.

I took babe to the allergist appointment with my 100 million questions in tow. Guess what, I was right all along. We were given a diagnosis of FPIES and a treatment plan! Nothing to be really excited about other than now, we have someone who knows what the hell is going on and can help us with a course of action. He told us that there is no test to help him at all, period. “If someone tells you need any more tests, do not do it. The best way to go about this FPIES stuff is to keep a detailed food journal.” Well this is music to my ears right?! I don’t want to have to put my babe through unnecessary tests and I detailed as shit! Each food we try has to be trialed, so what does that mean? We try that food in its purest form without any additives. That means I have had to learn how to puree food (this is a learning process too). We were doing each food for 10 days and if we didn’t have any reactions, we pass the food. We were able to cut the trials down to 5-7 days because we saw a pattern with his reactions so this makes it so much easier to trial new foods.

Being that social media is a big deal these days, I looked on Facebook to see if I can find a closed group for FPIES. Well of course I found that! Let me tell you, if you have anything weird going on in your life or a loved one’s life, find a closed Facebook group! The support that is within these groups is out of this world. The moms and dads that are in this group provide so much in the form of suggestions, experiences, documents, forms, links, recipes,  virtual love, pick-me-ups, my God I could go on for days. I was also able to find some excellent information from various FPIES organizations (The FPIES Foundation, Kids With Food Allergies, American Academy of Allergy, Asthma & Immunology). The shit thing is that this is a rare allergy and there isn’t a whole lot of information out there. So, the answer to “what caused this?” is still unknown.

So, as of today we are 5 months into our FPIES journey and we have 8 safe foods, 2 chronic (frequent night waking and intense crying at night along with stomach pain and reflux) foods that are not safe, and 1 acute (vomit to bile about 2 hours after ingestion, lethargy, drop in body temperature, and pallor) food that is not safe. Because we had an acute reaction to rice, we have been told to steer clear or oats, grains, corn and flours. We have to make sure we keep his safe foods in his diet to ensure we lose any of our safes and go backwards. Nobody like backwards! We have our first open oral challenge in the allergist’s office the week after babe’s first birthday to try out gluten free foods. This would open so many doors as far as our food trials go. When he is 2 will go back in to try the rice again. I cannot lie to you all and say I don’t get a bit down in the dumps when I see people giving their kid all kinds of food. I read articles of things 11 month old babes can eat and see people giving their babes all kinds of delicious food and want so bad to just hand my babe a cracker, a little taste of my dinner or a damn Cheerio but know if I do, I could be setting him up to suffer through a reaction. The hope is that we will grow out of this awful allergy before he is 3 but if I get my hopes too high, I am afraid they will be crushed like a bug, so, 1 day at a time; 1 food at a time; 1 hurdle at a time.

FPIES is a bitch for sure. The support that we have had from the Facebook group I belong to has made this more tolerable and the fact that our families take this seriously and support us is such a blessing. So now, we just take this beast as it comes and look at the positives we have in our lives. There is a light at the end of the tunnel (its pretty small right now) but one day we will be able to give our babe whatever he wants to eat without the fear and anxiety of a terrible reaction that may or may not come.

We will OWN your FPIES!


1 thought on “FPIES à La Mode”

  1. Such a scary experience. He is such an awesome babe. Always happy and flirting with the girls. He’s one handsome little babe!! I love everything about him. Love ❤️Grandma


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