Where to start?
Norah is our third child. With two boys, we were ecstatic to have a little girl! She is now 8 months old and the perfect little sister to complete our perfectly chaotic family; Mason (2) and Will (4) love entertaining their little sis. We like to run, jump, eat snacks, play at parks, take walks, and do everything that normal people do. I think of us as completely normal; it’s only in specific situations that we have to try to explain FPIES to the unsuspecting acquaintance, mostly little kids with sippy cups and their parents. Will and Mason are just now becoming aware of the fact that ‘milk stays on the table only’, ‘we can only have milk in big boy cups, not sippies’. Norah drinks from sippies. Norah cannot have milk or she gets sick. Norah has FPIES.
Norah has been a little higher maintenance since birth; broke her collar bone being born so quickly, never would take a pacifier, had constipation issues, had acid reflux issues and slept very little during the first few months, and always had to be held. It was during these difficult few months that in my exhausted state, I was willing to try anything to get some rest for either of us. I gave her formula.
I was nursing exclusively and one day I decided to try a bottle of formula – hoping to get some sleep for either of us after I filled her belly. Well, I got her to take a two hour nap. Nice. Not so much. She woke up vomiting and choking on it. I lifted her up, turned her face down and she proceeded to fill the seat of her swing with vomit as if it were a bowl. Again and again. As a first-time mom, I remember thinking, “oh no, my baby is puking” when it was just a decent urp of spit-up; completely normal. But this, there was no mistaking this. This was puke, a lot of puke. She stopped for a bit and then kept on, in a little cycle; barf, rest, barf, rest. Then she kind of foamed at the mouth and mucousy green stuff would come out once in a while during her dry-heaves. She looked pale and cold and clammy. Her eyes were open, but I remember thinking that it looked as though she were sleeping with her eyes open. Kind of a morbid look, for sure. It was scary.
I’m a totally logical, “type A” person. In my head, I quickly ran through the doctor visits I’ve had in the past with my other kids, recalling: If it’s just one puking spell, you get sent home. One vomiting session isn’t enough to warrant much of anything but a pain in the butt trip to the doctor, only to be sent home. There’s no fever, so it can’t be too serious of an illness. She had no other symptoms at all, and the puking stopped after about 45-60 minutes, so she can’t be super dehydrated. Then, she slept for about an hour. I proceeded to watch her like a hawk for that hour. By this time, I knew she needed a drink, so I nursed her as usual and she came back to life. I have never had a child with an allergy, and I knew that vomiting wasn’t a typical symptom of an allergy like swelling, rashes, etc. So, I thought, “that was weird” – but, she was normal again! Yay! Whatever…
Until it happened again, and again… Three times. I should say– I wasn’t that reckless. I did mention the episode to the pediatrician during her next two visits. By two doctors, I was told, “Maybe you overfed her,” and, “Vomiting isn’t an allergic reaction. Try again with a different kind of formula”. It was only after hearing that, that I did try again, two more times. The same thing happened. The third time, the lethargy was lasting longer, and I was scared. I was packed and ready to go to the ER 20 minutes away, with my two boys and lethargic baby. I told my 4 year old to put on his shoes; at that moment, she was waking and starting to come to life again as in the past, so I didn’t go.
I didn’t know any better. No one teaches you what shock is! The pediatricians weren’t helping and I knew something was seriously wrong only when I gave my Norah formula – and I was not over-feeding! Now, it wasn’t about getting sleep or the fact that I had to keep nursing – I nursed for 9 months with my other kids and was fully planning to again. But, I just had to figure it out. Something was seriously wrong and I wanted to know what– not because I wanted to feed her formula.
It was at this point that I made the last ditch effort to see if any other moms have seen this. I posted what happened on BabyCenter.com’s message boards. I am not a fan of boards and had never posted anything there before, but I knew it was popular and I was going to volumes of readers at that point. Guess what? Within a day, another mom and fellow FPIES mommy had pointed me to FPIES. I googled it. It was exact. We were textbook FPIES. I took her advice and joined a group. I got recommendations for doctors in the area and went to see one familiar with the condition. No surprise – got the FPIES diagnosis and a little more info.
No milk for Norah. Okay then. But then my mind went on thinking…No cow’s milk protein…no milk, yogurt, cheese, ice cream, crackers with milk, mac & cheese, cream of ____ soups in casseroles, parmesan cheese in spaghetti, grilled cheese sandwiches, pizza! – and on and on. I watched how much dairy my boys ate and I got worried. “This is going to stink– bad!” I thought.
I joined the facebook support groups and got more info, way more info than I wanted. The initial reading you find is hopeful, basic info, like most outgrow it by 3-4; many just have milk, soy, or a few other high risk foods as triggers. Then, in the online groups, I read stories that terrified me as a newbie. When I was already freaked out of just the milk issue, I read many stories and posts on things I would have never imagined. I was not sure I would be able to deal with it all– I didn’t hear many hopeful stories. Which now makes sense – with few issues, you don’t have to be that involved, it doesn’t effect your every move so seriously. Regardless, there seemed to be the most severe cases that were out and about messaging, and I found it great for them to have support, but terrifying for me as a new FPIES mom. In my limited experience, I now believe that these severe cases are in fact exactly that, the severe cases. I feel as though we are a normal, textbook case. Geez! Sorry, back to the Norah/FPIES part. . .
So we avoided milk/formula until 6 months (easy enough at this point) and I nursed. At 6 months we saw the allergist again and I actually left happy. He said to proceed as usual with any baby, just make food introductions a more conscientious event. Remember all of what you know and proceed with caution. “Okay, I can do this.” So, on we went. His first recommendation (based on new studies from Stanford), much to many’s surprise, rice cereal. Scary, but I’m the mom who simply wants to know, so I was all for it. Pass. Peas. Pass. Apples. Pass. Wheat. Pass. Avocado. Pass. By this time, I was relaxed. “Yay! We were M-PIES!”
Pears. FAIL. I do think I should mention that with pears, the first time was great, second ingestion was vomit in crib, not sure how much. Third time, LOTS of vomit, but no lethargy. It was much easier to handle than the trauma with the milk issue. But, now I was back to feeling anxious about more foods. But onward march. . . and we have not failed another food since! We even passed SOY! There is hope! I’m so excited about “fake dairy” right now – I think only another allergy parent can understand! 🙂 We have too many safe foods to list at this point, although I have yet to try chicken. However, I’m not worried about it. We can avoid it if we have to, but knowing me, I have to try so I know for sure.
So, there you have it. Norah’s FPIES story so far. . .
For any new parents, I want to say that I feel like this issue is much, much harder in the beginning, and in our heads than it is in reality. There are so many places you could be on the FPIES spectrum and no one knows what they are in those first weeks; so again, it was all a little daunting, and I feel for anyone out there going through it. As my cousin said (an allergy mom), “It’s as though there’s mourning period after diagnosis– all the “oh no”s and “what ifs”. In the FPIES area, it was hard to find an active person out there with a ‘normal’ case like I had read about. If you can relate to that right now. . . HERE I AM! 🙂 Also, just because we react to fewer foods, doesn’t mean the reaction is not as serious– any feelings parents are having are justifiable. That being said, I do know how lucky we are to have such a mild case of FPIES and I am glad that those with more severe cases have such a great online support group. We are all in this together!
Page published: June 19, 2012. Copyright © 2012,The FPIES Foundation