Hi! My little guy is almost 8 months old. When he was born he lost a lot of weight. He spit up and projectile vomited everything for months and was not thriving. At 3 months old he was just back over his birth weight (was born at 6lbs5ounces, and was up around 7 lbs). We had to sleep holding him upright because he would vomit and choke and turn bluish. He could not be laid down and could not be out of our arms. Now, he’s about 13 lbs at about 8 months. He drinks exclusively breastmilk. At the end of February, I cut dairy out of my diet, and finally he started to grow a bit. I delayed starting foods a little past 6 months because he was so tiny then and not sitting up yet, and really just starting to hold up his head. We did okay with some single food fruits and vegetables. He could not tolerate oat cereal mixed with breastmilk (though he loved to eat it). He’d choke and vomit profusely. I tried sweet potatoes once and it was okay. Then tried it mixed with turkey and he vomited profusely again starting about two hours after dinner and did so all evening and night. I tried other infant cereals mixed with breastmilk, and was thankful I was in the room when he started choking and vomiting. He was sound asleep when it happened and it went on for a few hours and we had to hold him upright on us the whole time. So, I started googling allergies to dairy in breastmilk, oat cereal, rice cereal, turkey, sweet potatoes, and... here I am. I haven’t asked my paediatrician about FPIES yet, but will at my next appointment. He did tell me that babies who are sensitive to dairy in breastmilk usually can not tolerate formulas and that I may need to breastfeed (exclusive pumper here) for 3 years. I’ve exclusively pumped for several of my kids, but never that long. 12 months is the longest. I’m going back to work at the end of August. Any suggestions, stories, contacts, etc are greatly appreciated. I’m having troubles imagining 3 years of pumping while working full time. This is my 4th child, and 1st with allergies. Thanks for connecting with me.
Hi Laurie Anne,
I am the mother of a 4-year-old, who has struggled with FPIES most of his life. I went back to my part-time job after about 3 months, and both jobs after 5 months. I did breastfeed/pump for 3 years. It actually got easier as time went, but I know it is very individual and different for everyone. (I also don't have 4 kids.) The first year was rough. The second year I only pumped once at work and then breastfed at home. The last year he only breastfeed once a day (but still got nutrients needed from that). We did have safe foods starting around 6 months (even if only 5-10 foods), otherwise it wouldn't have been possible for me with the amount of breastmilk my son would have needed.
When he turned 3, I decided I was done. So, there are formulas for FPIES kids with dairy (and soy seems to almost always go along with it) as a trigger- they are called elemental formulas. Very expensive, so check on insurance coverage (our state unfortunately denies it) . . . My son was successful with Neocate. Others seem to do fine with Elecare. If you test them, do not let go of your breastfeeding until you are really sure it is tolerated.
From your description, your son may have FPIES to all grains like my son. We did exclusively veggies/fruits and breastmilk until age 1 as not much was tolerated. Quinoa passed trial for us a bit later on. You can actually make your own infant cereal by crushing Quinoa cheerios (Quinoa Queen is the brand name- you can buy it online). Although my son was also allergic to corn, there are some on this site where that is the grain that works for them for cereal.
Please know that each FPIES kiddo has a unique list of trigger foods and safe foods. Although avoiding the common trigger list is probably a good idea, you never really know until you trial a food personally.
Hope that helps!
I can’t speak to working but I have two kids with FPIES and both had to be exclusively breast fed until 18 months because all introductions of food went really badly!
Question: is he at baseline? Is he no longer vomiting and refluxing on the regular? Does he have normal poop? Note that reflux medicines often need to be compounded for FPIES kids because while they rarely react to the medication they react to the inactive ingredients.
Until you reach baseline don’t trial new foods. He may be reacting to much more than milk through your milk. My 3 year old reacts to milk, wheat, egg, all stone fruits, apples, pears, oats, rice and more — while those reactions are not as severe as direct ingestion it does keep them from thriving.
Both my kids are still on reflux meds at 3 and 6. My 3 year old can eat 13 things and 6 year old 16. My 6 year old had breast milk until 5 to keep him thriving and then finally passed pork which gave him the nutrition he needed.
Having a dietitian on your team is important! Elemental formulas are an option for many FPIES kids but not all.
Good luck. You can do this!!