I imagine this is how it is with any chronic illness but that doesn't make it any easier to cope with sometimes. He has a chronic illness, an illness that has become complex- why would I expect things to be easy? Or quick? Or simple? Or uncomplicated? Maybe it is because when you're having good days, you get a false sense of security. You celebrate those moments and you live in them for a bit- not even thinking about all the days of hardship behind you or the ones that lay ahead. But that is a double edged sword too. Living in the moment, enjoying it for what it is helps cope and appreciate the small things....as long as things continue to go well. But when things start to compound, or spiral....having been given "normal" or hope, only to have it taken away just seems like a cruel thing. You have to learn, and accept that nothing is simple in FPIES.
Today, I had a list of things to accomplish...or- try to accomplish. I had high hopes to actually get a few things done, and even an order to get them done in. But between the weather and Little Man, there were other plans in store for the day and now I feel myself wondering what did I accomplish today? I made formula, but only one batch because even though little man's daddy was supposed to be home- he had to go run an errand, which would've been fine if Little Man was anywhere near in a good mood...but he was not happy today and we spent too much of the day trying to figure out why. Was it the millet porridge last night? I thought millet is safe but I always find myself questioning almost everything in his tiny menu when he starts to have "issues". Is it the omeprezole? Or is it something as "simple" as his teeth. Teething is not "just" teething- we find ourselves dissecting all the symptoms that would otherwise be normal for a baby to display for teething. But fussiness, screaming, decreased appetite, disturbed sleep, runny diapers, mucous in diapers, etc all can be lead up to reactions symptoms too! Nothing is simple with FPIES.....
So, I made 1 batch of the formula....will have to get to another batch tomorrow. Then it was time to run errands. Errands included a lab check for Little Man (more on that later). Errands also included researching at our local organic food store for pure vitamins (ie- no corn,dairy,soy,yucca,rice) for Little Man. I did find a company that is showing some promise but I also want to investigate further if the pharmacy can compound a multivitamin- just of the micronutrients he is not getting in his current hemp milk formula. With a calorically adequate formula and a source for vitamins; we could take food trials at his pace - SLOWLY, and not stress so much about his nutrition during it all. But the catch is, regular Multivitamins do not come corn free! There is either corn in the inactive ingredients, or there is corn in the vitamins themselves! This has led me to do hours of research, contacting company's for ingredient sources, scouring corn free forums for leads....and only getting disappointed over and over again. Nothing is simple in FPIES....
Now, I would much prefer my son get his nutrition from actual food -- vitamins, minerals, protein, fats, carbohydrates, and calories-- right from the source where it was intended to be. But when you have an over-reactive immune system acting foods and an immature digestive system such as Little Man's where very little food consumed (and none in it's raw form) is able to be consumed without pain, and the potential for an FPIES reaction, you can't "just" give the foods you know should be included in the diet. And to add to it, having a reaction means inflammation in the gut with weeks of healing, poor weight gain, and stomach pains, with bloody stools; and now we are also contending with villous atrophy (that is in my head continuously as to where it came from, is it healing? what are we doing wrong? what should we do differently? Is millet safe? Was it the soy? Is it the sunflower oil in his hemp protein powder? Could it be the peaches? How could it be the peaches? Are we doing everything we can to help him?....). Nothing is simple in FPIES....
Finding a treatment plan with an illness that is so little understood, and more often than not, not taken as seriously as it is....especially when you are doing so much at home to help your child to thrive....so they look so good on the outside but their insides are a mess. Finding doctors to help and to trust your instincts as a mom, to know that you have done countless (ok millions) of hours of your own research on your child's condition so that you are aware of best treatment options. Driving hours to specialists who are familiar with this little known diagnosis, teaching new doctors more about the illness you have become so familiar with, scheduling appointments, rescheduling appointments when they get sick, leaving messages for doctors- hoping they get the message...and understand it in the context in which you intend it to be received are all part of the everyday agenda of an FPIES parent. A chronic illness protocol involves a care plan. A simple run down of the diagnosis, doctors involved, and the treatment plan. But is a simple run down enough with a diagnosis so many have never even heard of much less can wrap their head around the complexity of? Nothing is simple in FPIES....
So, today my day involved making formula, running errands, getting formula ingredients specially ordered, looking in to where to get more peaches, researching vitamins, plus all the other "normal" things that keep a mom of four busy (laundry, dishes, groceries, homework, potty training, decorating the Christmas tree, making meals); and of course worrying about next steps with Little Man...especially after his labs came back in today....
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