FPIES & Proctitus

Wednesday, January 13, 2010

While I'm still catching my breath, I'd like to share one thing that has consumed us for the last month. Everything went from bad to worse in the last seven days.

At about 4 months of age, Claire had a couple of days worth of formula. She took it like a champ. A week later, she had another days worth of formula. Within days she began to show blood in her stools. After a visit to the pediatrician, we concluded she had an intolerence to cow's milk protein and we were going to stick with breastfeeding exclusively. Problem solved...

At 5 months of age, we started her on rice cereal. She ate ravenously for almost two weeks before I introduced her to oatmeal. She seemed to like that as well. Christmas in Tennessee came and I was ill prepared to feed her solids during our trip, so I didn't. We returned home and I gave her the oatmeal once more. A few hours after consumption she woke up in a pool of her own vomit, with swollen arms, purple little hands, and a splotchy rash covering her stomach and back. We paged the pediatrician at 11pm and he walked us through Benedryl and rehydration procedures. Shaking, we went to bed and woke up to our happy-go-lucky Clairey Lou Lou Ladybug.

I was nervous about giving her food again (Oatmeal was OUT), so I waited another week before giving her a mixture of sweet potatoes and rice cereal. She ate exceptionally well. Two to three hours later she woke up vomiting again, over and over. She got to the point of dry heaving. JP and I didn't waste a second paging the doctor again. He believed it was a stomach bug and reminded us of the proper rehydration procedures. My instincts told me it was the food, but I didn't know enough to argue with the doctor. We celebrated Christmas in Ohio without any solid food for Clairey.

We came home and I built up the courage last Tuesday to feed her breakfast (I wizened up after all of our late night scares). I gave her the same sweet potato and rice cereal mix as before. I figured that would tell us once and for all if it was the food or a stomach virus. She woke up from her nap and half an hour later the vomiting began. For nearly two hours we held our baby girl as she emptied her entire tiny body. She was pale, listless and clammy. I regret tremendously not taking her to the ER. I just thank God that she slowly came back to us after a little nap and small doses of breastmilk.

I owe an enormous thank you to Amber Bosler, who led us to the information about FPIES. She came upon it after her son suffered from vomitting after rice cereal. I spent hours researching and printing off information. Last Wednesday morning I went armed with food labels and my research to the pediatrician's office. We talked about a possible diagnosis and our options. The only piece of concrete information he gave me was a referral to an allergist... and a lot of support.

Clairey and I went to see our allergist today and our suspicions were proven true. Claire was diagnosed with Food Protein Induced Enterocolitis Syndrome and Proctitus. This is the most severe food protein allergy because she could have a systemic response (swelling, rash). Enterocolitis is inflammation involving both the small intestine and the colon, which is being triggered by rice, oat, cow's milk and possibly (unfortunately) other foods that we have yet to discover. We were prescribed an EpiPen for any subsequent episodes and strict orders to get her immediate medical attention as she's at risk for going into shock.

I was also asked if I would continue breastfeeding Claire or if I would like to get her on a specialized formula. I told the doctor that it was my intent to breastfeed through her first year, as the health benefits were important to me... and the cost savings of avoiding an exorbitantly more costly formula. That being said, I have been instructed to remove all rice, oats and cow's milk products (think milk, cheese, yogurt, butter, etc.) from my diet until further notice.

The silver lining in this nightmare is that Clairey has a very strong chance of outgrowing this syndrome by her third birthday. We'll test these trigger foods in the future in the safety of a hospital or doctor's office setting, so that (God willing) our episodes are behind us.

Clairey continues to be as happy and engaging as she's ever been. After the nurse gave her the dreaded "panel" prick to test for allergies, Clairey turned around and smiled at her. We are prepared, as a family, to keep her safe and sound from all that could put her in harm's way. Our little angel was a gift from God to teach us something about love and overcoming. Thank you, God.