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One day, there is a chance that you may find one or both of us in a panic, scrambling for towels and or extra blankets…pretty much anything within range that is absorbent and washable. Why? Because in addition to traditional food allergies, our daughter also has something called FPIES.
What Is FPIES?
Well, it’s pretty simple. Hmm, on second thought, it really isn’t…at least not to most people. You see, our daughter has multiple food allergies and is also suspected of having something called FPIES (food protein induced enterocolitis syndrome). Basically, if Baby Girl eats something she is allergic to, her digestive tract will become inflamed, and she will violently throw up off and on for hours, her blood pressure will lower and she can become dehydrated, and possibly go into shock. There is no definitive testing for it, no skin prick or blood test. There is no medication that can be given to stop a reaction, which on average takes 2-3 hours before it may occur. As of right now, parents can only test their children by giving them foods, one at a time, cringing and sweating while waiting to see if their child experiences a reaction, and the severity of it if so. In addition, just because there wasn’t a reaction the first few times, does not mean one won’t occur the next time around. In fact, it can take multiple exposures before a child reacts to a food.
Our Introduction to Childhood Allergies
Our first experience with this actually happened with our son over five years ago. He was only a few months old at the time and reacted so badly to cow milk proteins in my breast milk that he gagged and vomited multiple times until he became so lethargic that he passed out. We have a wonderful pediatrician who listened to my concerns and didn’t even hesitate to refer him to an allergist for testing. Fast forward to today, and Mr. T has outgrown his allergy to cow milk protein, eggs, and in hind site, we think he too, like his sister, may have been FPIES to rice for a while. Now, the only food he must avoid is the mighty little peanut.
Another thing that makes FPIES so complicated, is the fact that it is uncommon not just among the general public, but also among most pediatricians and general practitioners. Often times when a parent brings a symptomatic child to the doctor or emergency room, they are told that the child most likely has a stomach virus. A diagnosis usually comes after being seen and treated by an allergist, or a gastroenterologist. When your child does see an allergist or pediatric GI, the doctor is only able to make a diagnosis after testing to rule out other illnesses and taking into consideration your child’s symptoms.
Our Baby’s Struggle with Eczema
Our Baby Girl seems to have come into this world with a few more difficulties than her brother. She has always had skin problems which tends to go hand in hand with most FPIES children. We work hard to keep her eczema under control. Before we really knew what we were doing though, she actually scratched herself so bad that I took her to an urgent care facility one weekend because I just KNEW that the lesion on her cheek was infected. Blood work came back negative (thank goodness!) It still hurt to see that our poor baby had injured herself so badly. Mittens and socks never stayed on her hands, and any time she became upset, she scratched uncontrollably .
I hate to admit it, but I am “tailoring challenged”, so one of my best friends made special sleeping shirts for Baby Girl to get her through the night without literally scratching her face off by rounding off and sewing the sleeves closed on a pack of super soft Child of Mine By Carter’s Long Sleeve Bodysuits. Nevertheless, she was still uncomfortable, especially at night. Baby Girl to this day DOES NOT SLEEP THROUGH THE NIGHT, waking to “comfort nurse”. We were warned that children in her situation are not generally sleep trained as early as other babies and may not sleep through consistently for the first couple of years. I don’t know what other parents with children like our daughter have experienced, but as for us…this has 100% been the case.
*Update, as hard as it was, I finally weaned Baby Girl. It ended up being medically necessary for me to do so. I hope to discuss “Cold Turkey Weaning” in another post soon. Needless to say, our little one STILL isn’t sleeping all night.
dealing with fpies as a family
Danny and I are thankful that up to this point in our daughter’s short life, she has not had to battle anything else. Baby Girl in general is a vibrant and healthy child. Through all of the spunk, speed, and sass, you’d never know that there are days when she has suffered a serious reaction. Fortunately, she has never been hospitalized, but for many children like her, hospital visits are not uncommon. There is no doubt that caring for an FPIES child is certainly challenging. We, however, are also well aware that there are parents out there caring for children with much more severe medical problems than those of our own. Everyone will have their own struggles in life. Every family will have some obstacle to overcome, and this just happens to be one of ours.
Baby Girl still has eczema and experiences breakouts and flare ups, including that spot on her cheek that has bothered her off and on for so long, but for the most part we are able to manage it. As with many treatments, some have worked reasonably well for her, and others have not. The one thing we have invested in and will continue to do so, is a GOOD, SOOTHING moisturizer. Our favorite so far is the oatmeal based Bahia Body Beautiful unscented skin cream. It is made by a mom whose daughter also used to struggle with eczema as a young child. This cream has been the best moisturizer for our baby hands down. Believe me, we’ve tried sev-er-al! It’s the only one that will keep her skin moisturized without having to constantly reapply it.
BEING GRATEFUL IN THE END
As I sit here typing away in the bed, I occasionally glance over at the Video Baby Monitor that flashes back and forth between Big Brother and Baby Girl’s rooms. For now, they are both sleeping peacefully in their beds as is hubby over here next to me. I know that in another 30 or 45 minutes, our little lady will probably start stirring around and I’ll hear her feet pattering across the kitchen floor on her way to our room. Despite my many complaints about how tired I always am because of the lack of sleep, and having to constantly chase these two around all day, at the same time I can’t help but think about how grateful I am that we have these happy and otherwise healthy kids that I’m sure will wear me out even more tomorrow. Really, what more could we ask for?
Oh wait….sleep, we could definitely ask for more sleep.