Ellie was ‘colicky’ from birth. We were sent home from the hospital with the instructions that she is ‘just one of those babies that refluxes’ and to ‘be sure and lay her on her side’ so that she does not ‘choke or aspirate on her own vomit’. More than half of her feedings were projectile vomited, her sleep was irregular, and her crying was inconsolable. Exclusively breastfed, she was filling her diapers with blood by 10 weeks old. She was diagnosed with Milk/Soy Protein Intolerance and placed on an amino acid (elemental) formula, with the threat of hospitalization due to anemia.
At about 8 months of age we began solid foods in an effort to ‘weigh things down’, and she began bizarre symptoms to every food introduced. Her reactions to everything from rice cereal to bananas included profuse vomiting, severe diarrhea, manic moods, fever, lethargy and an acidic diaper rash that never went away. She underwent a lengthy amount of blood tests, scopes, and procedures. At 9 months old she was given the diagnosis of FPIES, and we were told there was no research, no answers, and no cure.
The specialists had no idea what to feed her. We repeatedly were told ‘we just don’t know’; though she would likely ‘outgrow’ her condition by age two. She remained on the elemental formula, and her symptoms worsened. Vomiting was random and often, her stool was extremely constipated, and chronic upper respiratory symptoms kept her wheezing. She developed food aversion, a distended belly, and full body eczema. She was scoped, biopsied, x-rayed, and given a colonoscopy. Traditional allergy testing (blood and skin prick) showed nothing. Her diagnosis was expanded to include colitis, and sugar intolerance (disacharidase deficiency). Her skin became so sensitive that she did not tolerate diaper creams, diapers, crayons, bath soap, or stickers on her skin. All induced vomiting, diarrhea, and shock like symptoms that were frightening. On occasion she also had hives and swollen eyes.
At 16 months old the allergist conducted patch testing (skin sensitivity testing) which resulted in a scar on her back where corn had been tested. We were told to immediately wean her from the elemental formula which had a corn base, and to feed her homemade almond milk because there is no formula in existence without corn. Our instructions were to move quickly getting other foods into her diet.
It was unrealistic to think that at 18 months she would suddenly be able to tolerate food. Not knowing what else to do, we stopped the formula and began giving her almond milk as instructed. And she stopped eating. Every 3rd bottle she vomited uncontrollably and she battled dehydration. She lost 22 ounces almost immediately, and I began watching her starve. This was petrifying. One night while attempting to comfort Ellie, I remembered a doctor and a book that was loaned to me when she was born; I searched the internet. Multiple intolerances, leaky gut, lack of bile, Illeal Lymphoid Nodular Hyperplasia, Non-Specific Colitis and it was all falling into place. All FPIES, and also all GAPS. Ellie needed food NOW, but the fear was crippling. I had been warned to stay away from high protein foods because she would most certainly react, and GAPS healing protocol started with meat broth. Surely a doctor such as this would have experience with a condition like FPIES. I had to try. Not knowing what else to do, I sent an email to Dr. Campbell-McBride in hopes of finding help where there was none.
What I received from Dr. Campbell-McBride was hope, and a treatment plan. I put Ellie back on the elemental formula, and began rotating through as many broths as I could find for corn and soy free meat. Ellie’s healing began, and within one month she was completely formula free, completely GAPS, and completely on the path to healing. No cough, no sunken eyes, no unexplained vomiting, and no milestone delays. Instead, she wakes up laughing. She has words. In fact, within 24 hours of being off of the formula she said 6 new words.
We don’t know how long it will take Ellie to find complete healing, but that is ok. Now we have a plan, and now we have hope. And with this I became determined that no FPIES parent should experience the fear and uncertainty of hearing medical professionals say ‘we just don’t know’. I am excited to funnel that resolution into the FPIES Foundation, as a team effort to create support, provide information, encourage research, and promote hope.
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Page published: June 19, 2012. Copyright © 2012,The FPIES Foundation