Looking for Support. Possible FPIES, Pediatrician Seems Unsure, Next Steps?
Hi there! I have a 6-month-old daughter, who I believe may have FPIES.
Our journey began when 6-8 weeks postpartum, when I had to stop pumping and breastfeeding following a premature (36w) birth, severe tongue/lip ties (corrected but still struggled due to prematurity and small size due to being a severe IUGR baby as well)
We had switched our daughter to Kendamil and after two weeks, her diapers still looked like a breastfed baby's dirty diapers. They were very loose, watery, and filled with mucus. We then switched to Nutramigen due to suspicion of CMPA. Our daughter continued to struggle with increased reflux, large amounts of spitting up (a few ounces at a time) and her dirty diapers continued to be 100% liquid. The dirty diapers were acidic with severe diaper rash, still had mucus and signs of undigested formula. We were on that from about 2.5 months until the day of her six-month appointment last week. With the dirty diapers continuing to be mostly diarrhea combined with her spit up/vomit and reflux and development of some small amounts of eczema, I began to wonder if our daughter may have other allergies outside of the suspected CMPA.
For weeks, my gut has been saying, "I think it's corn," but one of the pediatricians in our office shut that down and didn't seem worried by any of the symptoms due to our daughter's continued weight gain. Thankfully, we saw a different pediatrician during the 6-month visit, and she was concerned and provided referrals to the children's hospital digestive health clinic. Unfortunately, they cannot see our baby until late September. At this appointment, the doctor gave us some Amino Acid formula. Our daughter drank two bottles of it before her nap. A few hours later after waking up, she projectile vomited over 6 ounces of formula, multiple times.
It was then that I also began to realize how lethargic and tired our daughter had become the past few weeks and months. She's usually very happy, but she has been more tired and not like herself. When she threw up all the amino acid formula and had a very liquidy diaper, I felt like it began to confirm my suspicions that she is allergic to corn, since the amino acid formula is primarily corn.
Since then, we switched her to Alimentum ready to feed since it is the only hypoallergenic formula that is also corn-free. She has been doing great with this formula. She has stopped spitting up and vomiting altogether, her skin is clearing up, and she is happy again. Her dirty diapers are still somewhat loose, but there is no mucus, no signs of undigested formula, and they appear to be transitioning to be firmer.
With all of this said, my gut is thinking it may be FPIES. Which, of course, has me worried to start any solids with our daughter. She has hip dysplasia as well, so she has been in a specialty brace that has prevented her from being able to sit in a high chair until now, so we hadn't started yet even though she seems ready.
Our doctor is going to try a physician-to-physician phone call to see if we can be seen sooner at the children's hospital, but I'm worried that it won't happen and we will be waiting the next three months for her appointment.
Do others have any guidance? Did anyone have a similar experience? Does anyone have any tips of advocating for our daughter, especially because I'm scared to start introducing foods before she sees the hospital team.
Any insight or personal experiences would be welcome!