What is it like to live with FPIES? Well I can’t tell you anything except the mothers perspective, my son would tell you that he doesn’t know any different and that he just wants to eat normal food with the rest of the world.
Lets start from birth…. Michael was born full term but was only 4lb4oz, so right away the hospital wanted us to supplement my breast milk with milk formula. He wouldn’t drink more than 1/2 oz and was being fed every three hours. For some reason even less than a week old he knew something was wrong…..but I didn’t. I did everything the Doctors told me to do. I rocked him, I bundled him up, I did my shake/walk, I turned the dryer on to give him noise, we tried the radio, I tried a car ride, I tried it all. After a couple weeks of his horrible stools his bum was now chemically burned. So our Doctor at the time told us to spray dumboric acid on it (yes for athletes foot) and that the acid would neutralize the burn….He was by far WRONG! So after being told that it’s colic while I was calling them day in and day out we decided to get another opinion. This doctor told us about our “miracle cream” that we still use to this day during a reaction. He explained that he doesn’t know what it could be besides colic but that he does think something else is going on. To keep a diary of the times of day he was crying….
Well he was crying for almost 20 hours a day, I felt hopeless. Nothing I did seemed to make him any better, but I kept trying anyways. I walked with him, I watched him, I bounced him so gently, I did the bicycle move with his legs…..I just kept trying.
At almost two months old he had actually cried so much that he coughed up blood….my husband was in the shower as he just got home from a fire. I ran Michael in to him and said Thomas what do we do?!?! Of course I knew to bring him to the ER but do we drive or do we wait for an ambulance to arrive to bring him in? I can get there faster and the bleeding had stopped. Thomas first thought (just as I would have I guess) did you drop him? I looked at him like I was going to hurt him (must be where I got my now famous mom look from) and said no, he was crying, and he stopped for a second…..next thing I knew there was blood coming from his mouth and here look I have it on my shirt. So we brought him to the hospital where he was then admitted for his first time.
The GI doctor came in and told us that he had cried so much he actually broke a blood vessel in his throat and that is where the blood cam from, but that he also has blood in his stool. She said that he is allergic to milk and that most children allergic to milk protein are also allergic to soy. So she placed him on nutramigen, we thought that was expensive at fist look, but we went to babies r us and bought as many cans that we could afford to get us through for about two weeks. He was better for the first 3 days then started to cry like he used to. When I look back at pictures for all of this time frame I can see how swollen and sick he looked…..but I didn’t know better, and neither did his doctors.
So then at our doctor appointment. the 4th one that week our GI put him on Neocate Infant and told us that our insurance should cover it or to get Medicaid. Well we didn’t qualify for Medicaid; as we made barely too much, and our insurance denied it as it’s not for an inborn error of metabolism. We made it work because it was better for Michael. He started to do amazing, was finally gaining weight, actually made it onto the growth charts around 4 months old, gained above the 3rd percentile around 6 months old and started to really thrive.
Michael didn’t get tummy time like most children, because just the thought of putting him on his tummy felt like cruel and unusual punishment. We did give him mylicon for his gas that seemed to help until later on he built up a reaction to that, come to find out there are fillers in medications…
We got Michael a bouncer because bouncing out his gas seemed to help….though he still wasn’t tall enough so we had to put a heavy duty couch pillow under it. He fell asleep for more than 30 minutes…..it was amazing.
Then right around 10-11 months old, Nutricia added DHA/ARA to their Infant. He started to react, we were again clueless. Then realized the DHA and ARA was new…..so his doctor switched him over to Neocate Junior Unflavored and he was better again.
During all of this his first GI said that if we put rice in his bottle he would sleep better and be happier…..she was wrong…he was swollen and sick and I told her. She assured me no one could be allergic to rice as it is hypoallergenic… and then started pushing us to try stage one baby foods. I feel as if maybe Michael wasn’t pushed so hard so young on all these things that he wouldn’t be allergic to as many things, though that’s just a theory.
Around age 2 Michael realized that children should get to eat with their parents, and they should get a cake for their birthday…. Michael got a plastic cake that sang to him. So life was more complicated because he was starting to understand that everywhere has food. We are unable to eat out of the kitchen unless it’s on the dining room table and we clean the table and vacuum under the table and pick up any pieces left behind….We don’t eat in our car like most americans, so finger food is not really around in this house.
Around 2 1/2 Michael was diagnosed with FPIES, we were told that it’s not just multiple food protein allergies but that it’s FPIES. Wow we finally have a name!!! I had been researching this FPIES thing anyways curious and believing this is what he had.
By age 3 I had it all figured out, sure Michael still didn’t have a safe food….but he had his water and water can turn into ice. I shaved ice and made a Mickey cake! It was great! I put glow sticks inside that were pre broken for color! We had the family here and chopped it up on our table! It was amazing fun!
As much as family gets it and tries to understand it still goes over their head, and I don’t expect many people to understand the way I do, as I am the mother I have put hours upon hours into research. So much research that my sons doctor told me that’s what I should do, I should get my Ph.D. in medical research because I am great at it….I said nope I want to be a Nurse Practitioner and help children like Michael with rare diseases. I can make their life just a little more enjoyable….
Now Michael just turned 4 and we have his first safe food….HEMP! Say it loud and say it proud! We have a food!!!!!! I am jumping for joy!!!!! But his only safe food is now expired so we really need his sugar that we are trialing to be a pass, then we really need to find a vitamin. I will make Michael survive and I will not let him expire, or become so sick….I will not. I promised him that he would be okay and we would make it through this……and after all I am his mommy I am never to break a promise!