More than 12 million Americans are affected by food allergies. That’s a pretty staggering number of people who have to be vigilant about being exposed to food that can harm them. An allergic reaction can include symptoms ranging from hives, rashes and tingling in the mouth, to frightening ones, like swelling in the throat, difficulty breathing, loss of consciousness and even death. There is no known cure for food allergies.
Cristina Stainkamp of Holtsville has three young children. When her oldest son was just 18 months old he went into anaphylactic shock from just a drop of milk. “The thing that people don’t get is that we are talking about life or death. You would never think of milk as an enemy,” Cristina says. “People don’t realize that you can also have a fierce reaction just from cross contamination using utensils.”
As an infant, Cristina’s son showed signs that he was allergic to casein, a milk protein. After he started eating baby food, he showed external signs of an allergy. “When he was 18 months old, I made mashed potatoes from scratch with soy milk—but I added margarine and it had casein in it. At that time there were no food labeling laws [they went into effect in 2006]. I didn’t know that something really bad could happen. One little lick of the spoon and his entire body blew up in hives, head to toe. It was happening so fast. I had no EpiPen—his throat was closed and he couldn’t have Benadryl. It was very scary. I didn’t know he could die from it.”
According to The Food Allergy & Anaphylaxis Network (FAAN), an estimated 1 in 17 kids under the age of 3 have food allergies. There are eight foods that account for 90 percent of all food allergies in the US and include milk, eggs, peanuts, tree nuts, fish, shellfish, soy and wheat.
The medical community is studying the cause of the rapid increase in allergies. According to FAAN, medical data suggests it could be related to a phenomenon known as the hygiene hypothesis, meaning that because children in our culture are exposed to fewer germs than their bodies are used to dealing with, the immune system is deprived of the full-time germ-fighting job they have to do, and immune systems misidentify food as harmful.
Cristina knew that she could control her son’s allergies when he was home with her, but when he was about to start kindergarten a whole new set of challenges arose. “I was so scared about what to do,” Cristina remembers. She went to the school armed with medical notes, HIPPA letters and a request from her doctor saying that her son would require an aide for when he was around food. “It wasn’t like I was inventing something,” she says, “I wanted them to take precautions. Basically, he’s around food all day. It was just everywhere.”
Cristina said there was a study done in a school where allergic reactions were tracked and almost 50 percent of the reactions happened in the classroom. “You would think that it would be in the cafeteria. You see how much food is in the classroom,” she says.
Cristina worked with the school on a plan for her son and says,“Everything has worked out well and I’ve been very lucky with the schools. They’ve been very accommodating and I have the support of the teachers and the school nurse.”
“My children have an emergency medical plan written by their physician and the school trains everyone on how to use an EpiPen,” she continues. The EpiPens follow the children throughout the school day.
The allergies these children suffer affect everyone. “It becomes a family thing. In the beginning we used to feed the kids and then we would eat separately. And then as they got older I felt the separation and said we’re all going to eat the same food and take this on as a family,” Cristina says. Her son has had three other severe allergic reactions, so the Stainkamps are very careful about food. “We’ve never been to a restaurant,” she says. Cristina opened her kitchen cabinets to show me how each item contains a red or green dot, making it easy for her children to know which foods are safe and which are not. Red dotted items are on the highest shelves. There is not a drop of milk in the house.
Cristina became frustrated with the lack of information for parents whose children are suffering with food allergies. “There was no other help out there,” she says. She was aware of other groups that were formed for different special needs and, she says, “I thought, there’s no support for food allergies, and it is emotional and psychological and it does take a toll on the family. I’ve seen my child almost die four times. I felt like if I could network with people it would help.”
Cristina has a corporate marketing background, and she developed and launched ProtectAllergicKids.org (PAK) as a site that would connect parents of allergic children. “It was a learning process and I love it. It’s so creative,” she says. She spends about five to seven hours a day, seven days a week, answering e-mails, responding to message boards and phone calls from concerned parents. Cristina likes to call herself an “information dispenser.”
The PAK site contains hundreds of pages of information including where to buy food, travel tips, recipes and many other resources. PAK has already received more than 40,000 visitors and boasts more than 1,000 Facebook fans. Cristina hosts a support group as well as an all-ages PAK n’ Play Group that includes a “safe zone” for snack time.
PAK doesn’t hold any fundraising events but they are awarding scholarships to seven Suffolk County school nurses to attend the May FAAN training conference which will feature the latest information and research on food allergies with a special breakout session for the school nurses.
“If the moms stand together, they will get the knowledge and info that they need and the schools will respond to it,” says Cristina. “Yes, we’re the minority. Not every child has a food allergy, but if they band together then you have a voice for your children and it is going to make a difference. I’m keeping my child safe and helping others. I see this as a huge opportunity to help other people and to raise awareness.”
For more information go to www.ProtectAllergicKids.org, e-mail [email protected] or call 631-207-1681.
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