The worst part about FPIES, is not knowing that your child has FPIES

“So long as you have food in your mouth, you have solved all questions for the time being.” – Franz Kafka

Seems so simple doesn’t it? But, when you finish reading this post, you will find the quote to be one that helps people in Laura and my situation sleep at night. Our son, the boy responsible for carrying on the family name, was born with a special condition. His condition has led to my intestinal condition. Any time I fear that he is in danger of an episode, my stomach, like his stomach, turns to knots and the butterflies scream in anger and hammer my heart with everything they have. Miles has FPIES. FPIES is Food Protein-Induced Enterocolitis Syndrome. It’s a nasty little syndrome and the problem is that people just don’t know about it.

Miles is now three and a half and we have a pretty good grasp on his FPIES, but this wasn’t always the case. When he first started having episodes we were in and out of the emergency room and at a loss as we just did not know what was going on with our then infant. When Miles was born, he didn’t take to breast-feeding and we started him on formula. Lucky for Laura and me, we put him on Gerber Good Start. Everything went well for the next six months. I got to feed him, something I do miss about having babies, he learned to roll over and sit up. He was gaining a ton of weight. We had no idea that our little boy had a secret.

When he was six months old, one of my friends had given me some formula from his son that was a few months older and had grown out of it. The formula was a store brand. I happily accepted it, as anyone with a baby would. Formula is expensive! I went to work around 7:15 in the morning (I know, go-getter, right?) and when I left, Laura was feeding Miles his morning bottle. He was taking it like a hoss, too. Just a normal work day. The only thing that had changed that morning was that Miles got to drink a different, nasty formula concoction. Well, I got a text from Laura a couple of hours later.

“Miles is puking.” I replied something to the effect of okay. I tend to remain calm when the kids get sick. It stresses Laura out when Kennedy or Miles get a little sick, so I try my hardest to make everyone feel at ease. That’s what dad’s do, right? She texted back a few minutes later. “He won’t stop.” Okay, now I was a little worried. The flu sucks for anyone, but it can’t be good for my sixth month old. My little buddy. Then she called. Her voice was frantic. To be honest, I can’t remember exactly everything she said, but she was telling me that he was green, he was lethargic, he was sleeping, he wasn’t responding, he was puking, still, he was puking still, it wasn’t even puke anymore, it was like snot, not even bile, just whatever would come when he heaved, he was green.

My stomach was on the roof of my mouth. What did she mean he wasn’t responding? He’s only six months old. The only thing different that morning was formula. How can someone be allergic to formula? He had been drinking it for six months. I told my boss that my son was on his way to the emergency room and I left. I don’t know how long it took me to get there but when I got to the emergency room, my wife was on the gurney with my six-month-old, green son being carted into a room. Her eyes, I’m sure, were as wide as mine and filled with the same anxiety and fear. The only difference is she had the trauma of the ambulance ride and being with the paramedics trying to revive her six-month old child that was not responding and in desperate need of fluids.

They immediately hooked him up to an IV and ran tests. They gave him a lumbar puncture (that was the hardest thing I may have had to watch) and ran more tests. We were in the room for hours, and then all of a sudden he looked normal and returned to his same old self.

Miles in ER after first Episode

Miles in ER after first Episode

It was almost as though nothing had ever happened. You can see the evidence above. We both sighed, but the questions still remained. What in the world had happened? The doctor’s did not know. The TB test came back negative along with every other test that they ran. I asked for an allergist, but we were admitted. We spent the night for observation. Nothing changed. Miles was fine and no tests were able to show anything. I asked for an allergist again, knowing that the only thing different that morning was the formula, but the doctors didn’t think that it could have been that, so I never saw one. We were released after a couple of days and went back to our same old routine. We went back to our Good Start formula and we remained without incident for a while.

Miles was still growing at a normal rate. Learning at an amazing pace and doing things that infants do. While Laura and I were shopping at the grocery store we got him some of those Graduates foods. This time we got him one that was mac and cheese. Exciting for him! Some real food, not just green beans, corn puffs and formula! We had our meal. It was a Thursday. My neighbor’s ex-wife got a new mattress for their teenage daughter and were giving us the old one, so my neighbor and I went to go pick it up. I got a text.

“He’s doing it again. He’s not stopping.” Oh no! It had been two hours since he ate the mac and cheese and now he started puking. Not wanting to pay $400 dollars for a ride to the ER, we got him in his seat, and sped of to the ER. We explained to the front desk that we had gone through this and he responded best to the IV, we just need to get him started. We went through more tests, and this time, instead of completely emptying himself and crashing out in lethargy, he fell asleep. The doc came back and said he’s compacted and there’s just nowhere for food to go. We thought that was weird and went home and thought we had finally had an answer to this tricky little problem.

A few months later we had a family cookout and a couple of hours before I put the brats on the grill, we let him try some colby cheese for the first time. He loved it! It’s salty and sharp. Sure enough, two hours later, he began to vomit. He vomited until he couldn’t vomit anymore. Off to the ER again. We were tired and angry and confused and just wanted answers. We wanted to know what was happening with our sweet little boy. We hate that he is going through this.

While we were at the hospital, my sister took to the internet and started to research his symptoms. Her son had a severe peanut allergy and she was convinced that this was some sort of allergy. She came across some information on FPIES and as she was reading it she knew right away. Miles has FPIES. We know what he has. We know now! It’s a nasty little syndrome like I’ve said, but now we can start the road to management and knowledge.

The worst part about FPIES, is not knowing that your child has FPIES. Once you know, you can begin your elimination diets and find the culprits and get your child back on to a healthy path. In relative terms, Miles has it pretty easy. There are children who have very few safe foods. Safe foods are foods that are okay for those children to eat. Miles only has one known trigger food. His trigger food is cow’s milk. Since we know that, we just eliminate from his diet and we avoid episodes.

It can be tricky to avoid triggers and sometimes it can be heartbreaking. But, it becomes a part of your life. The hardest time I have, and it’s more me than Miles is during parties. Other children gather around for cake and he sits there and eats a treat that we bring for him. Typically we bring him a Pop-Tart or a gummy snack of some sort. I just want him to feel included. I’m not sure he even notices since it’s his normal,  but it is very important to avoid triggers.

Miles at party during cake time

Miles at party during cake time

Since his major episodes and self-diagnosis we have managed to nearly avoid repeat episodes miraculously. But, ironically enough, last Friday he had an episode. He can talk now. He’s three and half. I was working from home. He typically plays with toys or watches videos on the iPad. It got really quiet in the house. I went to the living room and he wasn’t there. I went upstairs and he was in his room in his bed. He just wanted to sleep. He did vomit a few times and wanted to sleep. It was certainly less severe than a couple of years ago, but it is still just as painful for me. He doesn’t know what he got in to. We are very careful, but even with so much care, it does happen. The only thing you can do is comfort him, and make sure he gets his fluids back into him.

For all the parents out there who are reading this and are thinking that this sounds a lot like what my child is going through, just know, that the worst part is over. You now know. You now know that your child has FPIES and you get to start the journey to management. It’s a bumpy journey, but the hardest part is over. You now can bring your child back to health and stop visiting the emergency room or having to watch them go through such agony.

Miles Patrick

Miles Patrick

 

A great resource for FPIES is the FPIES Foundation. You can link to them here:

fpiesfoundation.org

Please to enjoy.

 

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