War Against Allergies

by+Yuan+Duanduan

A special kind of canary inhab- its the Canary Islands off the northwest coast of Africa. The bird is highly sensitive to carbon monoxide， dozens of times more than human beings. Such a sensitive bird could be symbolic for children like four-year-old girl Dong Dong. Since she was born， Dong Dong has only been able to safely eat five kinds of food： vegetable puree， beef paste， corn puree， amino acidbased rice cereals， and a special kind of amino acid-based formula that smells like rotten eggs and fish. Any other food causes a severe allergic reaction which in serious cases could be fatal.

In the United States， around 5.9 million children suffer from food allergies. While China hasnt carried out related epidemiological surveys， pediatricians believe that in the past decade， the number of children suffering from food allergies has more than doubled. According to conservative estimates， of Chinas 100 million infants and kids under the age of six， about 10 million suffer from food allergies to varying degrees. And unlike past cases， these food allergies dont always go away as the kids grow up.

Dong Dong is one of the severest cases， the likes of which account for one percent of all allergic children. Dong Dongs mother， Min Su， who graduated from Peking University， posted the girls story on newsmth.net， a high-profile Chinese internet community frequented by intellectuals. She quickly found other parents with similar experiences. Soon， a QQ group， “Alliance for Parents of Allergic Children，” formed. In less than two years， more than 1，000 parents of highly allergic children joined the group. Over the past four years， these young parents， most of whom are well educated， have worked together to make life easier for their kids.

Constant Threats

Dong Dong was born in May 2011. Just three days after her birth， she began refusing breast feeding and vomiting severely. When she was six months old， the age most babies begin to try solid food， things got even worse for Dong Dong： She suffered severe allergies even from hypoallergenic food such as rice and carrots.

When Dong Dong was seven months old， her mother first learned the term“delayed food allergies，” a kind of immunoglobulin G （IgG）-mediated （type III） food allergy. IgG-mediated food allergies are not immediately obvious but induce a range of delayed symptoms like chronic digestive disorders， headaches， migraines and weight problems that may seem unrelated to specific foods. Allergies most often refer to immediate hypersensitivity， an immunoglobulin E （IgE）-mediated disorder of the immune system. Even when Dong Dong was two years old， her appetite was still very weak. She easily vomited or dry heaved and developed rashes all over her chin and neck， while most children her age were eating the same food as adults.

During those two years， Min took Dong Dong to almost every pediatric specialist in China. However， after numerous tests including checks for allergies， food intolerance， the immune system and metabolizing genes， doctors still couldnt identify the problem.

Some doctors had never seen such a patient， and didnt think anything was wrong. In China， even in the top hospitals， only 18 percent doctors are familiar with food intolerance. Min fell into a vicious circle of gastroenterologists sending her to allergists and vice versa. Allergists only deal with IgE- mediated problems and often recommended patients to the department of childrens healthcare. Since the healthcare department couldnt identify the problem， Min and her daughter were transferred to doctors of traditional Chinese medicine （TCM） and received treatment which never worked.

Later， upon advice from Professor Chen Xiannan at Beijing Childrens Hospital， Min began to write down every bit of information she could imagine every time an allergic reaction presented itself， including weather， temperature， environment， activities， things Dong Dong touched， and food she ate. To carefully record the information， Min filled up seven big black notebooks. The task was tedious， but the results were more than satisfactory. After she finished filling the fifth notebook， Min finally determined a list of problematic food. With forbidden food tightly controlled， Dong Dong quickly became healthier， and many symptoms such as vomiting were greatly relieved.

But improvements were slow. When she reached four years old， Dong Dong was still only able to eat five kinds of food. Every time Min let her try something new， symptoms flared up. Like other highly allergic kids， Dong Dong suffers from immune disorders and easily gets sick. At four years of age， she had teetered on the brink of death many times. Few can understand her parents life： Because of their daughters condition， they endure constant crippling pressure.

Alliance for Highly Allergic Children

After numerous visits to doctors， Min gradually accepted the fact that Dong Dong is a special child， and began to accept the fact that she would need more time to develop than others， as suggested by Doctor Xu Chundi， head of the pediatric department of Shanghai Rui Jin Hospital.

However， not everyone is willing to wait. In less than two years， Mins QQ group， an alliance for parents of allergic children， has attracted more than 1，000 parents. These well-educated parents share and summarize treatments and suggestions of doctors from all over China， and document their experiences with childrens care. They exchange the latest researches on allergies and work together to translate the latest medical guides and allergen lists. They usually communicate late at night after their children fall asleep.

Among them， Min is the most determined. Books on children allergies are piled up in her office and home. On breaks， she reads both domestic and foreign medical reports on allergies， studies reported cases， and translates articles to share with other parents.

An increasing number of pediatric specialists are getting involved in the treatment and discussion of allergies. Almost every doctor who has received Mins consultation letters is moved by the mothers persistence.

After seeing Dong Dongs tens of thousands of words of medical history recorded by her mother， Professor Chen Xiannan wrote five letters to Min. “She and other parents are actually pushing the development of medical science，” opines Chen.

Increasingly Serious Problem

In 2001， Xu Pengfei， vice head of the pediatric department of Beijing-based China-Japan Hospital， began to pay more attention to childrens allergies. Every month， he sees about 1，400 young patients， almost all suffering from allergic reactions.“Food allergies are hard to diagnose，”Xu opines. Because symptoms hide and not always obvious， many dont even realize its existence and have difficulties adjusting diets. Since many doctors even in Chinas best hospitals remain unfamiliar with delayed food allergies， young patients are often misdiagnosed as pneumonia or enteritis.

Moreover， food allergies often seem like natural problems arising during growth and development. As the immune system develops， allergic reactions gradually decrease around the ages of three， seven， and 15. However， about one to two percent of allergic kids， such as Dong Dong， suffer from severe symptoms and their conditions never seem to improve.

Many causes contribute to the increase of allergies. Although various theories exist today， Kari Nadeau， an M.D./Ph.D. and associate professor of allergy and immunology at Stanford University School of Medicine， leans towards the opinion that the cause of food allergies could be “some element of interaction between genes and the environment – air pollution， tobacco smoke， chemicals in water or the food you eat.”

Currently， Nadeau and her team are finding success with a trial treatment known as oral immunotherapy meant to desensitize children with severe peanut allergy. Her next step may be to desensitize patients with more than one allergy.

Min Su sees hope. She has tried to contact Nadeau in hopes of establishing a subcenter for her oral trial. And through WeChat platform， she organizes volunteers to spread more knowledge on allergies on internet.

Over the past four years， Min and her family have spent nearly one million yuan on her girls treatment. However， she is still lucky， in a sense. After numerous failures， Dong Dong has finally learned to cope with her limitations. Recently， Min has been considering sending her to kindergarten. Their first try failed due to a severe allergy and pneumonia six months ago. Although her girl could again encounter danger， Min knows that now， interacting with other kids her age is what Dong Dong wants most.