In April of 2011, we gave birth to our first child, a beautiful baby girl. She was tiny and precious. However, her health issues started almost immediately after we laid eyes on her. Hadley would not nurse properly, and after spending a week in the hospital with jaundice, she was placed on formula. A basic healthy, pediatrician recommended formula. Just weeks into her life Hadley developed horrible eczema, and vomited constantly. She also battled a series of viruses in the first eight weeks including strep throat and several other “viral infections” which explained her rash and fevers, or so we thought.
The vomiting continued for nearly 4 months. We accepted that we were just up against a little more challenging baby than most. Hadley slept alright, was very quiet overall, but was never a smiley or giggly baby like others around us seemed to be. Finally at 4 months old we were told if we introduced rice cereal it may help her acid reflux. The first day I gave Hadley rice cereal she screamed inconsolably for hours and vomited violently. Off to the hospital we went. We were told Hadley had some kind of gastro or flu. They decided to keep her overnight for observation and send us to a specialist the following day. Hadley vomited for hours and was on a clear fluid diet and given medication to try and settle her stomach as she was dehydrating. When we travelled 3 hours to the specialist the next day he immediately admitted us to the PEDS unit where Hadley was put on strict clear fluids as she was passing what they called “starvation stool.” The specialist also told us this was some sort of gastro possible milk allergy mixed with reflux. Hadley stayed in the hospital for 5 days and underwent many tests including a nuclear scan. We left with the diagnosis of a milk intolerance and mild reflux. She was put on a hypo-allergenic formula and was taken off of solid foods until 9 months.
As a new mother, this was very difficult as several close friends also had infants and I knew something was very different about my daughter. After travelling to a doctor for the next few months Hadley’s condition seemed to settle. The doctor told us she would likely outgrow it by the age of one and that whole milk would likely be alright for her. At one year we changed to whole milk and things spiraled out of control. Hadley stopped sleeping through the night. She would cry and be restless day in and day out. Suddenly her whole body broke out in a horrible rash; her face, arms and bottom looked as if someone had poured hot water on her. It was blistering. She had high fevers and would have vomiting episodes weekly. After many trips to emergency, they told us she was a very sensitive toddler and that she had bad asthma. They were unable to do any allergy testing so we had to take any possible allergens out of her environment including changing her diet: no citrus fruit, etc. We decided to put her on soy milk thinking this would be a good dietary change. We were wrong. Shortly after this change Hadley’s face cleared up but the vomiting, diarrhea, and rash on her bottom worsened; at times even voiding blood. Again, we were told she had gastro or a virus. When Hadley’s condition would get out of control she was put on an oral steroid which seemed to be a quick fix masking whatever the real issue was. She was put on oral steroids almost every 4 weeks for one year and was given Benadryl every day for 18 months. We were told she would outgrow this by the age of 2.
Hadley knew something was wrong. She started to avoid food. As her mother, I knew there was something seriously wrong and that there had to be something more than what I was told. She was battling the flu or these viral infections every couple of weeks. After doctoring for 2 years with a specialist they decided to draw blood. All of the allergy tests came back negative, causing a pile of frustration. Finally we decided to try rice milk and she seemed to slowly improve over time. The soy milk we thought was possible the problem. However, then she began reacting randomly to other foods, raspberries, fruit juice, corn. Hadley hadn’t had food before one year so as we introduced we began experiencing the same difficulties except much more severe as she was older. She would become irritated a few hours after and then would fever, vomit, shake uncontrollable and cry. Finally, one night I took her back to emergency where our fate turned. I explained to a new doctor Hadley’s situation; how for 2 years we had been medicating her and she seemed to worsen each time an “attack” occurred. He agreed that she was obviously very allergic and referred us that night to an allergy and immunologist specialist in Saskatoon.
When Saskatoon realized how much medication Hadley had been on, they fit her in within days which is very uncommon in our health region. We were feeling very relieved and waited in anticipation for this appointment. After a 6 hour drive, we went through a very detailed background of Hadley’s medical history, answering tons of specific questions. Hadley then underwent skin allergy tests and everything was negative. We were devastated. However, for the first time, the doctor didn’t end the appointment there and informed us that Hadley had a very rare allergy called Food Protein Induced Enterocolitis Syndrome. Twenty some days after her second birthday, we had a diagnosis. We left feeling thrilled, but confused. On the way home we read stories of others and we were blown away by how spot on her diagnosis was. Other people were experiencing what we had been dealing with for two years. Although it was rare, there was support.
We are very new to this lifestyle. We have only known for a few short months and Hadley’s trigger foods are still sorting themselves out. We have obvious triggers such as milk, soy, corn, fruit juice, strawberries, tomatoes, ketchup and raspberries. Many foods are only ok in moderation. Hadley continues to reject foods that she normally can tolerate. She also has continued difficulty with her skin, asthma, and bowels that we continue to monitor daily. People take for granted being able to freely feed their children and not worry about the juice box left out, or the bottle of ketchup on the table. Hadley is old enough now to tell us when she isn’t feeling well which makes it seem easier, but keeping her away from things that others are allowed to have is a challenge. Hadley will reintroduce her trigger foods between the ages of 3 and 4. However, I feel like she still has a long road ahead of her before she is ready to take on the challenge.
Hadley is a lot happier now, and she brings joy to our lives each day. Finding this support page and website has helped us immensely as there are so many blurred lines with FPIES and it truly is trial and error. Hadley seems to improve a little bit each day, but she still has attacks. They are fewer, but seem to be more intense. We continue to doctor in Saskatoon with our wonderful pediatrician who has helped us so much in so little time. Hadley is our little warrior and has taught us more in two years than we ever thought she would!
Page published: August 11, 2013. Copyright © 2012,The FPIES Foundation