Toddler suffering from rare allergic condition
Mother reaching out to community to help with cost of alternative treatment
Dairy, rice, broccoli, carrots, sweet potatoes, peas, corn …
It looks like an extensive shopping list, written on a magnetic whiteboard affixed to the fridge in Rita Adams’ St. Catharines home.
But the list of more than 20 items is instead a reminder of what not to buy. Several of those common foods on the list could be fatal to her one-year-old son.
Henry has FPIES (food protein-induced enterocolitis syndrome), an extremely rare and potentially fatal allergic condition that affects one in 10,000 people. And eating any of the items on that list can cause projectile vomiting, diarrhea, lethargy and pain so severe it can cause him to go into shock.
A few of the items on the list — such as dairy products, carrots, corn, mango, oats and eggs — are so toxic to Henry that eating less than a teaspoon is enough to cause a severe reaction.
Henry has been rushed to hospital emergency departments several times as a result.
“It’s not like normal allergies where people go anaphylactic,” Adams said, adding typical allergens such as tree nuts have no impact on Henry.
But because many of the foods that are toxic to Henry are not typical allergens, it can be difficult to ensure they’re not finding their way into his diet.
“A lot of the foods (in Canada) contain things like dairy, oats. Almost all the baby finger foods contain that kind of stuff,” she said.
As a result, Henry’s big brother, Jaysen, 14, “has become a pro at ingredient checking,” his mom said.
“He knows all Henry’s allergens and he reads the ingredient list and he double-checks.”
Adams said it’s difficult to ensure he doesn’t find foods he can’t eat while in the company of other children — especially at snack time. For that reason, she said Henry can’t attend daycare or activities at community centres.
And there’s no treatment available for FPIES in conventional medicine.
Adams said her doctors have told her that most children outgrow the condition by the time they reach roughly three years old, but due to the severity of Henry’s condition Adams is terrified her son might not make it until then.
In the absence of a mainstream treatment, the worried mother said she began searching for alternatives.
She found one.
It’s called bio-resonance therapy, a treatment she described as being “similar to acupuncture, without the needles.”
It’s supposed to treat imbalances within the body that can lead to health issues, including severe allergies, she said.
After researching bio-resonance therapy, including speaking with the parents of children with FPIES who have undergone the treatment, Adams is confident it will help her son.
“The success rate is over 95 per cent.”
She also found a clinic in Toronto that can provide the treatment, but it’s not covered by OHIP or provincial funding. And it’s expensive.
Despite spending her savings on the treatment and about two weeks of accommodations in Toronto, she was still about $3,500 short of covering the overall bill, and she reached out to the community in the hope of bringing in the remaining money.
But with about two weeks to go before Henry’s first appointment, an online fundraising site — gofundme.com/henrys-allergy-treatment — has already brought in more than $1,300.
It’s hard to tell from his cheerful demeanour, but Henry has had a difficult first year of life, beyond his current health concern.
He was born eight weeks premature, and was only 14 days old when he was diagnosed with meningitis.
“He’s had a pretty rough go,” Adams said. “I almost lost him twice.”