Ellie was born in August of 2009. 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'. Once home we found she slept an excessive amount, and breastfeeding was difficult. She continued to throw up and it worsened. More than half of her feedings were projectile vomited, her sleep was irregular, and her crying was inconsolable. We were told she was colicky, it was personality, and my oversupply of breast milk was causing her difficulty. We were in the doctor’s office constantly.
At 10 weeks old I was horrified to find Ellie begin to fill her diapers with blood. It looked as if someone had dumped a melted red Popsicle into her diaper.
The pediatrician began investigating. Meckles? Breastfeeding? Condition where the bowels kink and then straighten on their own? We were given a referral to the pediatric gastroenterologist, and at 11 weeks she received the first diagnosis of Milk/Soy Protein Intolerance (MSPI). Her symptoms progressed to include extreme lethargy. An elimination diet removing dairy, soy, eggs, and nuts was not enough, and I was then told she could not even digest the protein present in breast milk. She was weaned immediately and placed on a casein-free commercial formula, with the threat of hospitalization due to anemia.
There was initial change with weaning. She was moving, smiling, more active, and there was no visible blood in her stool. The projectile curdled vomiting and diarrhea continued. Her eyes were dark and sunken, and her body was puffy, but her crying was less. We were told what was left was personality, and so for 6 months she continued this way.
At 8 months were told to start solids because it would weigh things down and thicken things. We introduced all traditional first foods, beginning with rice cereal, and the pattern for each was the same. Ellie would eat the first bite, refuse the second, and then begin vomiting. Her stool began to burn her skin, and she often ran a low fever. At this point the GI conducted a long list of blood and stool tests, and gave instructions to feed her only formula. At 9 months old she was given the diagnosis of Food Protein Induced Entercolitis Syndrome (FPIES), and we were told there was no research, no answers, and no cure. We were instructed to continue the formula, and start trailing foods that had the least amount of protein such as apricots and plums. With time she was to ‘outgrow’ it, depending on how bad her particular case was.
Ellie’s symptoms continued and her list of symptoms increased. She refused a spoon, showed food aversion, and had a distended belly. Vomiting was random, her stool became extremely constipated, and her upper respiratory symptoms increased. Her breathing was often labored and wheezy. And the crying continued. Traditional allergy testing showed nothing, but X-rays showed colitis.
On the morning of her first birthday she received her first rectal scope and biopsy. There was concern for sugar intolerance and for her esophagus. We were told there was no need to try a probiotic, or examine candida. Instead she was prescribed an elemental (amino acid) based formula, and we had to try three before finding one she did not vomit profusely. She grew, but her symptoms worsened. 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. She began eating non-food items, and her eczema became full body. She was prescribed inhalers for coughing but the cause was unknown.
By 16 months old she had 5 fruits that she appeared to tolerate. We now began to see her have hives, swollen eyes, and manic behavior. The allergist conducted patch testing (APT) which made her extremely ill. The result was 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 was no formula in existence without corn. Move quickly getting other foods into her diet, and know that she was in good enough condition to go a month without worrying that she was not getting her daily recommended nutrition. She had never been failure to thrive.
It was unrealistic to think that at 18 months she would suddenly be able to tolerate food. And none of the specialists had an answer. 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, and we were watching her starve to death. This was the turning point. I suddenly remembered a doctor and a book that was loaned to me when she was born, and 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, but the GAPs diet started with meat broth. So 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’s email was hope, and the confirmation to start the introduction stage with Ellie. I put her 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 sunk eyes, no unexplained vomiting. Instead, she wakes up laughing. She has words. In fact, the first time we took her off of the formula she said 6 new words within 24 hours. She DANCES. She holds a beat, bobs up and down, twirls in circles, and sings all day long.
We don’t know how long it will take Ellie to find healing, or move through the stages of GAPS, but that is ok; because now she eats Real Food, and now she has hope.
A friend of mine has a wee little man with FPIES and I came across your blog through her.ReplyDelete
When I read your story and Ellie's journey with GAPS, as a mom and granny, my heart is overwhelmed for you and I ache with you. Know that I will send a prayer every time I am reminded of your situation.
prayers are ALWAYS appreciated. Thank you so much!ReplyDelete