I finally built up the courage to reintroduce solid food to Claire when she was seven months old. I agonized over which foods posed the least threat to her system, cautiously made the food, spooned it into her mouth, and then sweated through the hours and days until we could add another success to our story. For the foods that posed a higher risk, I followed the same protocol, but sweated harder, longer. I also prayed. It was all I could do; there isn't a handbook for Food Protein Induced Enterocolitis Syndrome. In the second half of Claire's first year, my prayers were answered. One by one, we added every single food we tried to our "Hooray! List". Not only was our trepidation slowly diminishing; but our greatest hope, that all of her trigger foods were realized, came true.
So we marched on... Over the next year and a half, we received conflicting advice from our doctors. I sided with our Allergist and my gut instincts, and kept Claire away from her trigger foods (rice, oats and sweet potato) entirely. It was easy at home, we hardly noticed they were gone. When we were out at playgroups or restaurants or preschool, things got a little stressful again. Thanks to her extensive "Hooray! List", we could almost always find a safe alternative. It was keeping "floor treats" out of her mouth that was the hard part. Not only was her diet a nutritious one, but she was growing steadily and thriving.
Last June, just before Claire turned two, we went to our yearly appointment with Dr. Hubbard, our Allergist. I expected that we would schedule a food trial (in the office) to see if she'd outgrown her FPIES. Instead, I was told that we would postpone trials until she turned three. Dr. Hubbard wanted to give her body ample time to work this issue out, or mature enough to safely withstand another dreaded episode. I was a little disappointed, but I saw where he was coming from and respect his judgment.
Then I had Jacob. Sweet precious baby boy came to us on October 1, 2011, and changed this waiting game. Thanks to our Labor & Delivery & Post Partum & Nursery medical bills, we met our sizable health insurance deductible. The thought of waiting nine months for Claire's food trials (in a hospital setting), made very little sense, financially, since our medical bills for the remainder of 2011 would be covered in full. I hated that money was such an important factor. I thought hard, prayed hard, and then scheduled an appointment with Dr. Hubbard.
We visited Dr. Hubbard in the beginning of November. He was pleased to see Claire's clean bill of health, but he cautioned me against subjecting her to her trigger foods before her third birthday. He gently reminded me that optimism and allergies could be a recipe for disaster. That said, he understood our perspective from the financial standpoint. He gave me permission to do the trials at home (since we live under five minutes from the emergency room), he reiterated the gradual progression of food introduction, and asked that we call if/when we decided to proceed. He also ordered some blood work to be completed before we did anything.
Claire's blood work looked reassuring. Dr. Hubbard noted that her total IgA antibody was slightly low, which was the same as her initial blood work at six months old. He suggested we wait the nine months, and retest her blood to see if her IgA level goes up to a normal level or goes down. The kicker with FPIES is that may or may not matter... And there is no skin prick test to give us our answers without having to trial the offenders. So much to chew on, and still no crystal ball...
After more thought and prayer (a reoccurring theme), I decided to move forward with the food trials. Rice, to be exact. On the morning of December 1, I boiled some rice and spooned 1/4 teaspoon into Claire's mouth. I couldn't believe I was actually going through those motions after nearly two solid years of protecting her little mouth from taking in any rice. I watched her like a hawk. I asked her how her belly was feeling every fifteen minutes or so. I checked in on her, about as often, while she napped. After the three hour window of time passed, without event, I breathed a little easier.
That night, as I was bathing Claire, I noticed a couple of red bumps on her legs that hadn't been there before. The next morning, I gave her 1/2 teaspoon of rice. Over the course of the day, I observed a red, bumpy rash that appeared to be spreading across her body. It looked like eczema. I was positive this was the beginning of some sort of reaction.
JP was traveling for work that night, and I laid alone with my thoughts. I feared what might be happening to Claire, questioned my premature pursuit of these trials, and cursed myself for doing this to her. After hours of reading new research studies, I reached out to an FPIES mom that I had met at the FPIES Walk in Chicago. Her son has the most extreme case of FPIES that I am aware of; six "Hooray!" foods at the tender age of three. She's seen it all, and is a wealth of hard-fought, hard-earned knowledge. She encouraged me to keep going. So I did.
The next morning we upped the portion of rice to one teaspoon. The following day was two teaspoons, and for two weeks we continued to multiply the daily "doses". The eczema cleared up on the third day and never came back. Rice was ceremoniously moved to the "Hooray! List" :)
By the end of 2011, Oatmeal joined Rice on the "Hooray! List" and we rang in the new, promising, year with Sweet Potatoes. And just like that, FPIES was behind us. An enormous weight has been lifted from our hearts, and life just feels different. Freer. Even still, for the last three days, I've nervously spoon fed Jacob his first tastes of oatmeal, as Claire sits by his side with her own bowl.
Amazing things have happened since we first stepped onto the FPIES scene. Information is spreading to the medical community, the International Association for Food Protein Enterocolitis and The FPIES Foundation have been established, and fundraising and research are underway. It's all thanks to the brave children living with FPIES and the army of dedicated and concerned parents and physicians who love them.
Our story ends here. We owe a debt of gratitude to the doctors who supported us, and the FPIES parents who shared their wisdom. We also thank the good Lord that this wasn't a life sentence for Clairey. We pray for those FPIES families who are still begging for answers and digging for hope. Most of all, we pray for the helpless babies and toddlers and preschoolers and beyond who hurt and are hungry for more. Help is coming...
On July 23, 2011, we participated in the first ever FPIES walk in Chicago, thanks to the incredible efforts of some incredible families. It was an experience to remember, and one we hope to have again. P.S. Team Claire is in yellow. Loud and proud :)
