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.

The Magic of Gavin

I have always wanted two or three kids. I was actually leaning towards three but my ex made the argument that all travel deals are for families of four. We tried for a second baby when my daughter was five months old but I was breastfeeding too much. I had hoped that once she started solids, she would nurse less, and I would get my fertility back. That never happened. Refusing to be frustrated by the whole thing, we decided to plan our wedding and I got an IUD.

Four or five months before the wedding the baby talk came back up. I wanted both my children at the wedding. My ex wasn’t sure if he wanted the second, fearing it would break down our relationship. He wanted more us time. I was pretty fixated on wanting another munchkin. I got my IUD out 14 weeks before the wedding, figuring my dress would still fit if I got pregnant right away. Two weeks before the wedding we found out we were expecting. Unfortunately, it was right before my bachelorette party. It was worth it though. My daughter was a beautiful flower girl and my son was a tiny six week fetus. His due date was 11/11. If you are into the spiritual world, that’s a pretty magical number.

The weirdest thing about my son’s conception is that my twin flame messaged me the night before we conceived. We hadn’t been talking but he had been reaching out every few months. Usually it was just a sexy photo sent when he was drunk. Hello Friday night 2 am. I’m not going to lie, it was hot as fuck. Thank you for your donation to the cause good sir.

Besides the 11/11, which he didn’t end up being born on, there is a bigger reason why my baby is magic to me. I had been sick with FPIES my entire life and I had given up all hope on figuring my stomach out. Sometimes I was sick, sometimes I was fine. I felt like I could never be thin because it was like if I got too hungry I would puke and get a migraine. Breakfast was always difficult. Definitely no fluids before food. My daughter also has a minor case of FPIES that would never have been diagnosed. She would have just been deemed to have a sensitive stomach like mommy. Going on an allergy free diet for Gavin was one of the hardest things I’ve ever done, mostly because of the backlash of other’s pushing formula instead. It was the best thing I’ve ever done though. He was too allergic to soy and dairy to have any formula we tried. Being on the diet for him, I suddenly felt better. I remember one day being shocked that I went five hours without food and I was fine. Being able to eat salad for a meal is huge for me. I used to fixate on absorbent foods. I feel as if that little guy saved my life. I feel awful that he had such a rough go the first year especially. He is doing great now and eating almost everything. He had such a severe case but recovered faster than expected. I think breastfeeding helped his gut heal faster but I will never forget what he went through for me.

Bulimia & FPIES

I have such mixed feeling about my bulimia since finding out I have FPIES. FPIES causes projectile vomiting, diarrhea and stomach aches if you eat something you are allergic to. I’ve had stomach issues since birth and it was assumed it was because I was a premie born with an underdeveloped stomach. I heard FPIES was only discovered 10-15 years ago. When I was in highschool I remember so many days with crippling nausea. I would lay in bed all weekend just watching cable reruns. I was honestly too sick to have much of a social life besides dating a bit.

I did try pretty desperately at 17 to find out what was wrong with my stomach. I hid my bulimia from my doctor, throwing up relieved so much of the nausea. My weight didn’t really improve. I felt as if I couldn’t go past two hours without eating because the nausea would creep up. Constant eating kept my stomach bugs at bay. I leaned towards overexercizing over purging since my mom knew. She was convinced I would ruin the piping in the bathroom from vomiting. If I purged too often in a week I would tear my esophogus but the thing that really concerned me was my heart arthymia. Basically my entire highschool career I was bothered by chest pains and low blood pressure. Bring on the salty fries. Pretty much my metabolism was fucked by days where I was too ill to eat much.

I was mostly recovered from bulimia by the time I got pregnant with my daughter. It began when I was 12, a decade was long enough. I vowed to get my shit together. I was still uncontrolable vomitting through my entire pregnancies. After my son was born and sick, we realized it was diet related. I changed my diet to breastfeed him and I felt a million times better. Knowing that sometimes it is physical, just something upsetting my stomach, has mentally helped me so much. At times I am sick I do worry if I will relapse with the bulimia. Times like these, where I am gaining weight from depression and meds are especially hard. I want to be healthy though. I don’t want to constantly feel like I am having a heart attack. I want to be a good role model for my children. Our allergies suck sometimes but we must love our bodies no matter what. Currently, I’m white knuckling through my bad body image. Staying on a workout schedule and accepting I’m just in a rough patch helps.