My son is now 7 months old and I am almost certain he has FPIES. I am exclusively breastfeeding and at around 2-3 months he was diagnosed with a dairy and soy intolerance due to green mucusy stool with traces of blood. After removing the foods from my diet he was less gassy and had normal breastfed baby poo. At 4 months our pediatrician recommended starting some solids. We took it slow and he seemed fine with rice cereal, bananas and sweet potato. After having carrots a small amount with breakfast and rice cereal with lunch he started vomiting several times a few hours after lunch. He was lethargic and just not himself. Thankfully he recovered after time and breastmilk. Then we held back a few days and then reintroduced on some bananas and safe foods. After a week or so we tried pear only a few spoonfuls and two hours later he was vomiting repeatedly until it was bile. Super lethargic and pale I almost rushed him to the emergency room but held back. After a Telehealth with my pediatrician and some time and small amounts of breastmilk he recovered. We continued on breastmilk for a few weeks then started some what “we thought“ were safe foods for him banana and sweet potato spaced out only once a day. Then one day after sweet potato same thing two hours later and vomiting but not as severe this time. So we waited a few more weeks and just today decided to give him a small amount of banana which he has had many many times before and a few hours or so later he was vomiting multiple times, pale and floppy in my arms. I took him to the doctor and she saw him about an hour after his first vomiting episode and started to perk up again. Doctor said only to give him breastmilk until we can see an allergist. He also will be having surgery in August for a hernia which makes me so nervous he might have a reaction to anesthesia. I just feel so nervous that he has has no safe foods and am afraid that something will happen to him if I give him any food even ones we thought were safe. Thankfully he is a healthy weight and I have a good supply but I’m nervous he isn’t getting everything he needs nutritionally from just breastmilk and he would gag on the Neocate when I tried it. Any thoughts if this is FPIES or steps I should take would be greatly appreciated.
I am so sorry to hear about your little one’s feeding struggles! What a challenge for all of you. I don’t have medical insight about whether this is fpies (it certainly sounds like it it’s but the hernia sounds like an extra layer of complication).
I am writing to simply say that our allergist told me that breastmilk exclusively until one was nutritionally fine. I was panicked when our second child also had fpies and couldn’t imagine how I’d feed him anything and do the whole food trial process again. Since he was very high on the growth charts from almost only breastmilk up until that point and I had no supply issues, our allergist reassured me he would be fine. I am writing to share the same with you. Every child is different to be sure, but my now healthy and happy almost five year old had almost only breastmilk until 11 months old when we finally got a safe food or two.
It is such a challenge to navigate this but you and your little one are so strong! Keep nursing and looking for answers! This website is a great resource and if you can I’d recommend seeing if there are other fpies families in your area. It seems to be more and more common (at least from my perception).
It definitely sounds like an FPIEs reaction to me. I am not a medical professional. My son has FPIEs and from our experience it sounds like a reaction. One of the crazy things we learned with our sons FPIEs is that you can think a food is safe and it can be, but after a particular AMOUNT is ingested it causes a reaction. That may be your case. For example, we thought after two years my son had outgrown a reaction to bananas. We trialed it and he passed the “trial” but then after eating a whole banana went into a reaction. So there’s a certain threshold that their bodies can’t take and it causes the reaction.
Glad to hear he is a healthy weight and can do the breast milk. Breast milk didn’t work for my son. I breastfed him for 7 months. He was failure to thrive and in bad condition. Neocate was our miracle.
We worked with a special unit at our children’s hospital that works with families whose children have their doctors scratching their heads as to what is going on with these kids. We were able to get the FPIES diagnosis through them. From there we work with an allergist and Gastro Do. who teamed up to help our son. One thing we were severely lacking when we started this journey 4 years ago is a professional to help with what you should try feeding your child. The most important aspect for a child with FPIEs if you ask me! So we paid out of our own pocket for a nutritionist. She works with FPIES families and is located in Boston. We would Skype with her (we live in PA). She was able to give us direction and suggestions as to what to trial and how to trial foods. Her information was the most helpful resource we had.
Please let me know if you have any questions or if you would like her information. And hang in there because I know this is not an easy journey you are but you aren’t alone. Others have walked in those shoes and hopefully we can provide you with helpful info for you and your little one.
Your story sounds familiar. There is light at the end of the tunnel- My 5-year-old son is growing out of FPIES! I echo the breastfeeding as long as possible sentiment- it truly what saved us a lot of heartache. We constantly had foods fail after they had been safe for months- If you take a break from a food, then he can react to it when you introduce it again. I had to keep the foods in a constant rotation, which trust me is a challenge if you go on vacation or your toddler gets picky. We managed to always keep my son in food- though different rotations of food- just barely. He had a 5-food diet at age 2. Another key point is when they get a little older you can see the "soft" signs (yes I am a poop studier) before the food reaction gets violent, so you can pull the food sooner.
My 5-year-old also completely refused to drink Neocate formula- even the flavored kind. He reacted to Elecare (but I have heard of some FPIES families having a lot of success with it). Finally, but you have to be at least one years old, my son really liked Neocate Splash.
So, you are not alone! I got great tips from this communication board. Our doctors had never had experience with an FPIES case that crosses across so many food groups, so I didn't get a ton of help.
Your story sounds similar to our story. I am so sorry your family is going through this. Your heart just aches for your child.
During our experience, we really went down hill once I stopped breastfeeding at 1 year. My child lost weight for the next month. The pediatrician told me we would find safe foods, but we never did. The clinic was not familiar with FPIES back then. Every child is different, but for us it would have saved us so much pain if I continued to breastfeed past 1 year. My child didn't accept the Neocate or the others, but finally accepted the Neocate Orange Splash.
I hope this helps you some and know you are not alone. It is hard, but worth the struggle to protect your baby's development. Trust your mama intuition.