I'm a first time mom, just over 7 months into a year's maternity leave with my gorgeous, happy, sweet boy. Yesterday, my beautiful baby Matthew was diagnosed with Food Protein Induced Enterocolitis Syndrome (FPIES) to rice. No one I know (with the exception of one person) has any idea what FPIES is, or what it logistically and emotionally means for our family. I am writing this blog in the hopes of chronicling our journey, so that other parents, frightened of what lays ahead, might get a real-time view of what this means.
Here's a quick background (or read the longer version): Matthew had severe vomiting and diarrhea on May 10th and 11th. After 10 vomiting episodes in a few hours we took him to Sick Kids Hospital's ER and, much like the family doctor and 3 Telehealth nurses concluded, it was a stomach virus. I accepted that but I couldn't fathom how he might have picked it up. Ten days later the same thing happened, but this time, that same diagnosis didn't sit right with me, despite the nurse's insistence on the phone. Twice in ten days? When no one else was sick? I looked back at my logs and realized he'd had rice all three days. I looked back to when I first introduced rice, and he'd vomited the first time though I chalked it up that day to too much vigorous jumping with his fingers in his mouth. After all, they say, rice is a great hypoallergenic first food so it couldn't have been the rice...right? (Wrong.) I made an appointment with the pediatrician, who characterized FPIES as "rare" and referred me to a pediatric allergist, who diagnosed FPIES based on my food logs. She is quite a lovely person and I felt better having her help me to make a plan based on the scientific literature (e.g. avoid oats, poultry and legumes) as well as anecdotal evidence from FPIES moms that I found online (4-3-4 method of food trials, discussed below).
My thoughts are racing. I am terrified.
Terrified of the worst - that my child might not be able to eat anything other than breast milk (yes, my mind goes straight to the worst outcomes first) until he is school-aged. Terrified that every time I feed him something, he will endure prolific projectile for hours, possibly vomit bile, be hospitalized for dehydration and shock, will pass blood in his stool, and will develop a feeding disorder from the trauma of it all. These are all things that have happened in other FPIES families. Now, it's also possible he has only one trigger, an outcome I hope for most. But I try to imagine the worst and hope for the best.
I am also in mourning for the loss of what I had hoped to be a happy, if not sleepless, maternity leave. I feel robbed. I enviously look at people walking, carefree, with strollers and Starbucks because, now, all I do is worry.
I worry that we can't leave the house. He might vomit in the park, on another child, at circle time at the Early Years Centre, in the stroller or on me. Should I take towels and changes of clothing for the both of us everywhere we go? Someone once said to me "meh, kids vomit". Well, this isn't just a run-of-the-mill vomiting episode; this is 10-20 times within a couple of hours, followed by lethargy and an urgent need to re-hydrate with a fluid he can keep down.
Also, I worry because he will currently not take a bottle, which means right now, I need to be available for him every day, all day. And all night (we had dropped to one night feed on solids, but are lately doing two without solids). I worry he's not getting the calories he needs from my milk alone which means increasing my supply (nursing all day long, so never mind about the park!) and/or feeding him an expensive (but hopefully well-tolerated) specialty formula that one does not just find on the shelves of the drugstore.
I've spent my last week or so researching FPIES online, realizing that basically:
- no one knows how it works or why it's on the rise
- there is no diagnostic test
- there is no treatment other than elimination of the offending food
- single-item food trials over weeks are required to determine which foods are triggers (i.e. even if he passes the trials, by the time my maternity leave is over, he might have only a handful of safe foods)
- every child experiences different triggers and severity of symptoms
- symptoms mimic the symptoms of a stomach virus so diagnosis is slow and misdiagnosis is common
- many doctors are not still aware of FPIES or misunderstand it to be a typical allergy
- a child can have chronic and/or acute FPIES and the symptoms may differ
Other things on my mind right now include:
- how will he go to daycare if he still needs to nurse? Even with some safe foods, would it be safe?
- how will I return to work if he never takes a bottle?
- how can I increase my milk supply to meet his needs? (even though I was looking to start the weaning process over the next few months!)
- how will I be able to enjoy that baby shower for my cousin next weekend - what if he vomits?
- how do other parents do this (cope with anxiety and food trials)? And how do they manage to have more children??
- how will we cope when it comes time for those oral food challenges in a hospital?
We had 7 foods that we tried without reaction, but only for three days each. They now each must be re-tested, but with our allergists' reassurance, we will do only another 3 day trial for those foods. For all new foods, we will do a 4-3-4, meaning 4 days of the new food in doubling doses, starting with half a teaspoon, three days off and 4 days of re-introducing the new food in small quantities. If there is no vomit, we can call that a safe food! Slow and tedious wins the race. There are lots of different ways to do food trials, though.
Today, after a week of breastfeeding after his last reaction, our allergist asked us to start on solids again. So we tried avocado. I had high hopes because he loved it the first time around. For some reason, he hated it today and most of the half teaspoon wound up on his bib. More anxiety. What if he won't eat solids? I still watched him like a hawk the whole afternoon and was beside him at the mere hint of gurgling or coughing. Nothing. But I'm not celebrating yet. We'll try a teaspoon tomorrow and hope he likes it better.
Our small victory for today: Although he cried when we tried to bottle-feed him, he did take 1.5 oz of expressed breast milk by syringe. Hopefully we can graduate to a sippy cup if he won't take the bottle.
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