Treatment for FPIES

My autoimmune disease causes vomiting/diarrhea when I eat food or take medicine I’m allergic to. It can also cause lethargy, dehydration and shock. 25% of FPIES patients also have regular allergies. FPIES is considered rare in babies, although some babies are misdiagnosed with reflux or milk allergy. It is really rare for an adult to not have outgrown the disease, like myself. The hospital treatment for a FPIES reaction is IV fluids and Zofran (an anti-nausea medication).

Mother’s day weekend of 2017 I was hospitalized for FPIES and ended up in the ICU. At the time only my son had been diagnosed and I wasn’t sure why I was so sick. I suspect I also have MCAS, another autoimmune disease as well. My body was so reactive at the time it felt like my throat was swelling shut for up to an hour after even a sip of water. It scared me a lot. I tried to find purified bottled water and getting a high tech water filter did help some. I was on a very restricted diet to breastfeed my son who very reactive at the time. I think I may have overdone eating peanuts, which caused the whole mess. I had recently lost 15 lbs in 2 weeks even though I was eating 3500 calories a day.

While in the hospital, on Mother’s day, alone, the doctors did not understand how I got so sick so quickly. The ICU doctor straight up did not believe that it was quick. My potassium was lower than some nurses had ever seen and yet I was still conscious. They told me I was dying and my breastmilk was toxic. I was in keto acidosis. The doctor insisted I had been sick for months and that sick babies need to be on formula. She called CAS on me and reported me for breastfeeding. She claimed I ruined my health to breastfeed. Maybe that is true, in a sense. Before going on a diet for Gavin though, I was sick a lot. I had no idea why. I took way too many pregnancy tests because of my random weeks of vomiting. Even birth control pills made me nauseous.

I ended up being released from the hospital on the Monday with better potassium levels. A week later I was breastfeeding again and Gavin was deemed failure to thrive, too allergic to have any of the formulas in Canada. Coconut water and eventually potatoes became staples. Now, I’m not breastfeeding anymore but I do have low B12. Burgers and B12 needles are on the regular menu these days. I know how to rehydrate myself and as long as I am careful to not ignore symptoms, things should be good. FPIES is usually straightforward but you can be more reactive when your immune system is down, think post flu or post antibiotics. It is really about management. Gut bacteria plays a huge role. Breastfeeding, playing in grass/dirt, petting animals are all helpful. Probiotics weren’t an option for Gavin because he was too allergic to the barley they were grown on, but even that, the evidence is debatable for their use long term.

My advice? When you have a sick baby, or a rare disease, it is really helpful to do your own research. We work really closely with allergists and at one point had a nutritionist for Gavin. I have the most faith in specialists.