One of my favorite parts about being a nutrition specialist is talking to parents. While sometimes I just answer questions, other times I am able to hear a family’s actual allergy story. This is great because it helps me understand what parents are really going through.

Unfortunately, one thing I constantly hear from parents is that it took months and several doctor visits before their child was finally diagnosed with milk protein allergy.

Since there seems to be a lack of awareness about the symptoms of milk protein allergy, I wanted to quickly run through some of the most common symptoms – the more allergy parents or soon-to-be parents know, hopefully the better the diagnosis process.

Because one of the symptoms of a milk protein allergy is extreme fussiness, doctors often dismiss the other symptoms and diagnose the baby with colic. This happens all too often, causing little ones to suffer for far too long.

For more information on colicky babies and milk allergies, check out the article: What is Colic.

Other common symptoms of a milk protein allergy include:

• Diarrhea
• Bloody stool
• Vomiting
• Skin rashes
• Fussiness
• Low or no weight gain
• Gassiness
• Wheezing
• Failure to thrive

If you’re baby is experiencing any of these symptoms, visit your doctor. And in the mean time check out testforallergy.com to take a free test online that will help you determine if your baby has a milk allergy.

- Nita
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It’s always great to find a new food allergy resource to help keep your allergy-prone little one safe and healthy. It’s also nice to have somewhere to go when you need advice from healthcare professionals and fellow food allergy parents. Kids With Food Allergies recently created a new food allergy resource center to do exactly that.

The resource center has Kids With Food Allergies’ publications, as well as resource sections that cover the following topics:

• Allergy Friendly Food Reports
• Food Allergy Basics
• Diagnosis & Testing
• Emotional and Social Issues
• Food Allergens
• Food & Cooking
• Gastrointestinal Disorders
• Holidays
• Managing Food Allergies
• Medication & Pharmacy
• Product Safety & Labeling
• School & Preschool
• Shopping
• Support Groups

Let us know what you think of the KFA resource center and what other good food allergy resources you recommend.

- Christine

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Last week Robert F. Kennedy, Jr., announced the formation of a new Food Allergy Initiative Advocacy Steering Committee. This is great news for the food allergy community. Read the release below that went out about the initiative and let us know your thoughts.

- Nita

Robert F. Kennedy, Jr. Announces New Food Allergy Initiative Advocacy Steering Committee
Leading parent advocates from across the country join forces to advocate for more research funding to find a cure
 
WASHINGTON, DC, May 14, 2009–Today, as we continue to mark Food Allergy Awareness Week, Robert F. Kennedy, Jr., member of the Board of Directors of the Food Allergy Initiative (FAI), announced the formation of FAI’s Advocacy Steering Committee. The committee’s objectives are to help build a strong nationwide presence for the food allergy community in the public policy arena; and to actively seek to increase federal funding of food allergy research, as scientists believe that with proper funding, a cure can be found in less than a decade.
The new steering committee comprises 16 leading parent advocates nationwide who confront the daily dangers of raising children with severe food allergies.

“FAI is tremendously honored and grateful to have such an esteemed group of parents who are willing to join our effort to find a cure,” said Kennedy. “These parents are proven advocates and support group leaders in their local communities. We are thrilled to add their energy and expertise to our advocacy program.”

Steering committee members include:

Gina Clowes, Chair – AllergyMoms; Cranberry Township, PA
Denise Bunning – Mothers of Children Having Allergies; Lake Forest, IL
Nicole Smith – Allergic Child; Colorado Springs, CO
Sue Wagner & Carol D’Agnese – San Diego Food Allergy; San Diego, CA
Rhonda Riggott Stevens– Education & Advocacy Solutions; Durham, CT
Debbie Hogan – Parents of Children with Food Allergies; Tampa, FL
Maria Acebal – Safe at School Partners, Bethesda, MD
Nona Narvaez – Anaphylaxis and Food Allergy Association of Minnesota; St. Paul, MN
Barbara Calluori– Food Allergy and Anaphylaxis Coalition of New Jersey; Nutley, NJ
Sari Canell – Food Allergy Educational Alliance; Scarsdale, NY
Chris Hardy – Parents of Allergic Kids; Charlotte, NC
MaryKay Hill – Vermont Food Allergy Organization; Shelburne, VT
Sally Porter – Food Allergy Initiative Northwest; Sammamish, WA
Meg Goss & Sheree Godwin – Food Allergy Association of Wisconsin; Madison, WI

“I am very pleased to take part in FAI’s new steering committee,” said Committee Chair Gina Clowes. “For 11 years, FAI has led the way in funding research to find a cure to this life-threatening disease. Nothing is more important to me and millions of other parents who wish they could take their children to restaurants, birthday parties and school cafeterias without living in constant fear of exposure to potentially deadly allergens like peanuts,tree nuts, milk, eggs and wheat.”

“My fellow committee members are the best and brightest advocates from all over the country,” Clowes continued. “Every day they are out in their communities making a difference for families with food allergies. As a group, we will devote their attention, resources and expertise toward making sure the federal government is on the leading edge to find a cure.”

About Food Allergies

There are no medications to cure or control food allergies. A strict diet and avoidance of the allergenic food is the only way to avoid a reaction, yet the most common allergens – peanuts, tree nuts, eggs, milk, fish, shellfish, wheat and soy – are staples of the food supply and virtually impossible to avoid completely. Accidental exposure to even a minuscule amount of the offending food can cause an allergic individual to react within seconds, often leading to life-threatening anaphylaxis that causes throat swelling, a dramatic drop in blood pressure, vomiting and even death within a matter of minutes. Although researchers estimate that food allergies cause tens of thousands of emergency room visits each year, they do not understand why rates are increasing so alarmingly, particularly among children. As the CDC report indicated, in a recent five-year period, the rates of peanut allergies among children literally doubled, and allergies to other foods are similarly increasing.

About the Food Allergy Initiative (FAI)

The Food Allergy Initiative is a national 501(c)(3) nonprofit organization that funds research seeking a cure for food allergies. It was founded in 1998 by concerned parents and grandparents to support: basic and clinical research worldwide; better public policies to make the world safer for those afflicted; and educational programs to make the hospitality industry, schools, day care centers, and camps safer. FAI is the largest private source of funding for food allergy research in the United States, contributing more than $60 million toward the fulfillment of its mission. For more information, visit http://www.faiusa.org/, call 212-207-1974, or e-mail info@faiusa.org.

 

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Our post today is a special guest blog entry from Gina Clowes, founder of AllergyMoms.com and author of One of the Gang: Nurturing the Souls of Children with Food Allergies. We would like to thank her for guest blogging for us.

As Tom Poti skates by you at lightening speed, you might never imagine that a trace of peanut butter would be the one thing that could slow him down. Tom’s food allergies are so severe that even trace contact with it has caused serious reactions in the past. Yet, these allergies didn’t stop him from pursuing his dreams. Tom Poti is a National Hockey League defenseman for the Washington Capitals, and was part of the USA hockey team that won the silver metal in the 2002 Winter Olympic Games. Being a role model, Tom wants to share some important message with our kids: “Never let food allergies stop you!”

This is the most important message in my book “One of the Gang: Nurturing the Souls of Children with Food Allergies” and Tom Poti is the perfect person to deliver it. So I was delighted when Tom agreed to be part of my book and also grateful that he revealed more with me about his perspective on growing up with food allergies.

Tom Poti grew up in Worcester, Massachusetts and recalls that from early on everything he ate made him sick until extensive allergy testing revealed seasonal, environmental and multiple food allergies including: peanuts, tree nuts, chocolate, msg and fish.

Doctors recommended he participate in sports to keep his lungs healthy but playing outdoors often triggered asthma or seasonal allergies. Instead, he took up ice skating and soon after learned to play ice hockey. He quickly excelled at skating and within a few years, he gave up other sports in favor of playing ice hockey exclusively.

Over the years, he learned to manage his food allergies and asthma with the support of his parents and the watchful eyes of his friends. His parents knew it was hard for him at times, but they let him know that others were worse off than he. They focused on the positive and did not allow Tom to feel sorry for himself.

Early on, his parents started by teaching him foods that he could and could not eat. One key point was a rule that many allergy parents try to teach their kids: When in doubt, go without. Tom said his parents told him that “You can never go wrong by avoiding a food when you are unsure about the ingredients.” And “They would always either send me to the party with my own (safe) foods or feed me before I left for the event.”

Later, Tom got by with a little help from his friends. He says that friends were “always my second set of eyes –always watching out for any of the things that I needed to avoid.” He said that good friends should also know “exactly what to do if you have a reaction.” Even today, teammates will look out for Tom and let him know if someone is eating something that could be dangerous for him.

In the past, Tom acknowledged that there are “those people who are going to criticize you or make fun of you” but that many others are “willing to help you and be concerned about it and help you along the way.” Again, the lesson here is to focus on the positive.

I asked Tom about past “contact reactions” because many people dismiss them. Tom explained that several of his serious reactions were contact reactions including his last one a few years ago when he used a lotion that, unknown to him, contained nut oil. He also recalls a contact reaction that came on very quickly, while he was away at college. Tom touched a doorknob that his roommate had accidently contaminated with traces of peanut butter after eating a sandwich.

Tom said that contact reactions “are very serious because you never know when they can occur no matter how careful you are.”

Those of us with food allergic children know that it is hard for them when they are excluded from celebrations. Not surprisingly, Tom said that the hardest part of growing up as a child with food allergies was “not being able to eat some of the goodies at parties and things and not getting to eat my Halloween candy.”

Although Tom acknowledges that it can be challenging at times he has put it into perspective in his own life. I asked him what he would like children with severe food allergies to know and he said: “Although its very hard and tough on you sometimes, don’t let it hold you back from doing anything because there are safe ways around everything!”

Tom volunteers as a spokesperson for FAAN to let kids know that having food allergies need not stop you from living the life of your dreams. It certainly hasn’t slowed Tom down!

And someday, if Tom has a child with food allergies, he said he would simply “educate him as much as possible and teach him to be ready for anything.” Maybe even the Olympics!

 
 
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The 3rd annual National Eosinophil Awareness Week is right around the corner — May 17 through May 23, 2009. This week was created to help raise awareness for all eosinophilic disorders, including eosinophilic esophagitis (EE). EE is a rare inflammatory, gastrointestinal condition where the wall of the esophagus fills with eosinophils.

The number of people that are getting diagnosed with EE is rising but the condition is still relatively unknown. EE is often caused by food allergies and children with this condition are usually on a severely restricted diet. Because of this, many of them use an amino acid-based formula like Neocate as their source of nutrition.

For more information about EE, check out our EE 101 entry.

Since this rare disease often goes undiagnosed for months, National Eosinophil Awareness Week is a great time to help raise awareness about these conditions. To find out what events are going on during the awareness week, click here.

And to see what another family is doing to raise awareness about EE, check out this blog entry about Tami and her son Justin of Richmond, Virginia.

What are you doing for Eosinophil Awareness Week?

- Christine
Neocate is now on Facebook!