Home  Email
EpiPen® (epinephrine) Auto-Injector refill reminder Safety and Prescribing Information Center for Anaphylactic Support
Add to Google
Subscribe to the AllergyMoms Blog

Surf Sweets Launches 'Helping Hearts' Facebook Campaign

February 2, 2010 — Gina Clowes (Views: 186)

Surf Sweets Launches 'Helping Hearts' Facebook Campaign

Become a Surf Sweets fan on Facebook and help two great causes in February

PROSPECT HEIGHTS, IL, February 2, 2010 - There's never been an easier or sweeter way to help a few great causes than through Surf Sweets new Helping Hearts campaign.

Surf Sweets, the country's leading maker of naturally sweetened, totally delicious gummy candies and jelly beans, announced today that for every new fan who joins its Facebook page in February, it will make a $1 donation to one of two charities: The Ocean Project and KaBOOM!

The Ocean Project is national non-profit organization that advances ocean conservation in partnership with zoos, aquariums, and museums to help them effectively educate for conservation action. Their efforts helped create World Oceans Day, which is now recognized by the United Nations and celebrated worldwide on June 8.

KaBOOM! is a national non-profit organization that, envisioning a great place to play within walking distance of every child in America, brings together business and community interests to construct new playgrounds, skate parks, sports fields and ice rinks across the country.

"Our Helping Hearts campaign is a sweet idea with the potential to greatly benefit two organizations that mean a lot to Surf Sweets and to our customers," says Bert Cohen, President and Founder of TruSweets, LLC, a socially responsible company dedicated to building delicious, sweet snack brands like Surf Sweets that are better for our families and our planet. "At the same time, Surf Sweets gains new Facebook fans with whom we can interact and share news about our delicious products," he adds.

It's easy to join the Surf Sweets Fan Club. Simply find Surf Sweets on Facebook, or go to www.surfsweets.com and click Find Us On Facebook. Once there, join the Surf Sweets Fan Club and then select the charity that you’d like the $1 donation to benefit.

Surf Sweets will donate up to $1,000 that will be allocated proportionately to the two charities based on Facebook fan selections. The campaign will run from February 1-28, 2010.

About Surf Sweets

Surf Sweets is the country's leading brand of naturally sweetened, totally delicious gummy candies and jelly beans made with organic and natural ingredients and without any artificial colors and flavors. Surf Sweets is owned and operated by Prospect Heights, IL-based TruSweets, LLC, a socially responsible company dedicated to building delicious sweet snack brands that are better for our families and our planet. The company was founded in 2008 by Bert Cohen, an entrepreneur with a successful track record of building businesses in the natural foods industry. Surf Sweets currently offers seven unique varieties of mouth-watering gummy candies and jelly beans that are available at mainstream grocery and natural foods stores, online and at specialty retailers throughout the U.S. and Canada. For more information, visit www.surfsweets.com.

# # #

EE Eosinophilic Esophagitis

January 25, 2010 — Gina Clowes (Views: 815)

The following is our Q and A with Calman Prussin, M.D. (photo) from the National Institutes of Health (NIH) and NIAID on Eosinophilic Esophagitis. Although this disease is commonly known as “EE” in the allergy community, according to Dr. Prussin, Eosinophilic Esophagitis is now abbreviated “EoE” by the clinical community; “EE” is used as an abbreviation for “Erosive Esophagitis.”

1. What is EoE?
EoE is characterized by inflammation and an abnormal accumulation of a certain type of immune cell (eosinophils) in the esophagus (the tube through which food travels on its way to the stomach). Inflammation is the tissue response to injury or an immune response. The inflammation and eosinophils disrupt the normal function of the esophagus, resulting in the symptoms of EoE.

2. What is an eosinophil?
An eosinophil is a type of white blood cell. It is often found at higher-than-normal levels in people with allergy, asthma, or parasitic diseases.

3. What are the symptoms of EoE?
The symptoms of EoE vary in different people and at different ages. In children under the age of 12 years old, the relatively non-specific symptoms of spitting up food, nausea, and vomiting are most common. In older children (those aged 12 to 18 years) and adults, the symptoms transition into difficulty swallowing (dysphagia), narrowing of the esophagus (strictures), and food getting stuck in the esophagus (food impaction).

4. What is the cause of EoE, and how do food allergies relate to EoE?
People with EoE often have many food hypersensitivities. They may test positive for allergies to certain foods in skin prick tests or in blood tests, but they do not typically have severe–sometimes life-threatening–food allergy, known as anaphylaxis. Eating culprit foods activates the immune system, which leads to inflammation and the accumulation of eosinophils in the esophagus. Children with EoE improve when on an allergen-free elemental diet (a liquid formula that contains no protein allergens) or a six-food elimination diet (no milk, soy, eggs, wheat, peanut, seafood). Upon returning to an unrestricted diet, however, symptoms and eosinophils return.

5. How is EoE diagnosed?
The diagnosis of EoE requires an upper endoscopy in which, under sedation, a fiber optic scope is placed in the esophagus and biopsy samples are taken. Because the biopsy findings in esophageal reflux (a condition in which stomach acid leaks up into the esophagus) can mimic those of EoE, the biopsy should be performed after a person has been treated with an acid-lowering medication.

6. How is EoE treated?
A variety of treatments for EoE are currently available, and research is ongoing to identify more effective treatments. Elemental and six-food elimination diets are effective treatments, but they can be difficult for families to maintain. Swallowed corticosteroids, such as fluticasone and budesonide, are often used "off-label" as topical therapy to maximize the reduction of inflammation in the esophagus while minimizing the effects on the rest of the body. Using food allergy tests to identify specific culprit foods causing EoE, though useful in research studies, have not translated well into clinical practice. Such tests are useful, however, in conventional anaphylactic food allergy.

7. Does anyone outgrow EoE?
Studies suggest that about 15 percent of children experience remission of the disease.

8. Are there any comorbid conditions associated with EoE?
EoE is commonly associated with food hypersensitivities (positive skin tests or positive blood tests) and some milder forms of food allergy, but generally not with anaphylaxis. Other allergic diseases, such as hay fever, asthma, and atopic dermatitis (eczema), are also commonly seen in people with EoE.

9. Is there a cure?
At present, there is no known cure. However, research into EoE has increased dramatically in the last 10 years. A better understanding of the disease will point researchers towards promising treatments and possible cures.

Dr. Prussin is chief of the Lymphocyte Biology Unit at the National Institute of Allergy and Infectious Diseases (NIAID), National Institutes of Health. One of his research goals is to understand why the immune system makes different types of allergic responses to food. Currently, he is studying anaphylactic allergy to peanuts and EoE to find out the differences between these two food allergies. To learn more about Dr. Prussin's work, please visit http://www3.niaid.nih.gov/labs/aboutlabs/lad/lymphocyteBiologyUnit/.

For information on research on EoE, please go here. http://www3.niaid.nih.gov/Volunteer/EE/

For information on peanut allergy research, click here.

For more information on food allergy research at NIAID, go to http://www3.niaid.nih.gov/topics/foodAllergy/.

Top 10 Food Allergy Posts for 2009

January 25, 2010 — Gina Clowes (Views: 709)

No Joel Stein, We’re not nuts!

10 Surprising Places Where Peanuts Hide

Food Allergy Accommodations in School: What do other parents really think?

PF Changs: A Food Allergy Moms Dream Come True!

A Parent’s Worst Nightmare

Does Eczema Disappear in Soft Water?

Peanut Allergy Student: Too Much Information

My Son’s Story with Allergy Drops (SLIT)

Football Star Dies of Food Allergic Reaction

Milk Allergy Cure

Best Tasting Allergen Free Pizza in the North

January 20, 2010 — Gina Clowes (Views: 339)

Best Tasting Allergen Free Pizza in the North
Mandy's Pizza develops gluten free pizza for his son, and food allergy suffering customers

Pittsburgh - January 19, 2010: Mandy's Pizza, with locations in both the Northside and West View areas of Pittsburgh, PA., has developed what they believe is the best-tasting allergen-free pizza in the North.

Tasting, researching and developing recipe after recipe in an effort to keep it simple...safe....and near authentic for his son and customers, Mandy's has developed a proprietary allergen-free recipe that tastes nearly as good as a traditional high-gluten pizza. This pizza is not just gluten-free, but free of any dangerous allergens such as egg, milk, soy and corn. Mandy's Pizza has taken what others have done with gluten-free, and made it available no matter what your allergy is.

"When our 7-year old son Brandon, who suffers from severe food allergies, came to our pizzeria and wanted to "smell" a pizza, it was that which made us come up with a pizza that even he could enjoy." "It is truly saddening when our son sits in our pizzerias and knows that there is nothing for him to eat", states Steven Negri, President of the Mandy's Pizza Group.

Steven, and his wife Veronica, have tried countless store bought and commercially available gluten-free pizza mixes, frozen shells, and ready-made pizzas over the course of 2 years. It became apparent that nearly all of them either had a gritty taste, or worse felt like eating a sponge. This "texture issue" can be synonymous with the fact that in an effort to meet the needs of all food allergies which can include egg, milk, wheat and soy. By combining some very unique alternative flours along with allergy-free substitutes allowed Mandy's Pizza to develop a product that actually tastes near to traditional pizza.

"We know what it's like to have a child with severe food allergies so it was only natural to combine our understanding of the handicap along with our experience in the pizza industry to provide a solution full of taste and texture that can be enjoyed by both young and old", states Veronica Negri.

Mandy's Pizza makes sure to make these pizzas for our allergy customers with tools and stones that are washed, sanitized and stored in a sealed container in an effort to prevent cross-contamination.

Mandy's Allergen-Free pizzas will be offered in several varieties that include a standard cheese pizza with your choice of marinara or garlic sauce; spinach and feta; broccoli and feta; or a version of our award-winning white pizza.

Mandy's Pizza recommends that anyone interested in learning more about the pizzas to email us from the Contact Us link located at mandyspizza.com.

Keeping up with tradition by only serving "fresh-dough" pizza in sizes from 10" to their famous 30" Monster topped with the finest cheese and meats, they also offer a full-line of over-stuffed hot hoagies, signature flatbread sandwiches, and the largest wings in town. To top it off, Mandy's is now the only pizzeria in the Route 19N corridor that can offer people who suffer from food allergies the ability to enjoy pizza delivered hot to their door.

Founded in 1979 and Mandy's Pizza was an innovator in the Pittsburgh area by being one of the first to offer home-delivery. They have also won award for being Best Pizza in the North, and well as a top-ranking at the annual Pizza Pizzazz Competition sponsored by NAPICS, the North American Pizza and Ice Cream Expo, located in Columbus, Ohio.

Contact Info:
Steven Negri, President
412,670.1327
mandyspizza@verizon.net

# # #

The Gift of an Ordinary Day

January 18, 2010 — Gina Clowes (Views: 357)

My friend Donna, who has had a very tough year with some personal challenges, and who has three kids and a full time job outside the home (as well as inside the home of course) sent me this link. Every other mom I’ve sent it to has reported that they cried while they watched it, but they were grateful to be reminded of “The Gift of an Ordinary Day

Click here to watch.

Get your Kleenex ready.

Food Allergy Mama, Kelly Rudnicki

January 13, 2010 — Gina Clowes (Views: 708)

The following Q&A is with Kelly Rudnicki, the "Food Allergy Mama" and author of the delightful new cookbook: 'The Food Allergy Mama's Baking Book'

You got started as an allergen-free baker largely because your oldest son, John, developed food allergies. How did you go about transforming normal recipes into allergen-free recipes?

My son John was officially diagnosed with life-threatening food allergies near his first birthday. With his dairy, egg, and nut allergies, I knew I couldn't buy a fun, whimsical cake at my favorite bakery to celebrate his birthday. I searched high and low for allergen- free cake recipes, but the ones I tried lacked flavor and were dry. As a self-proclaimed sweets freak, I was disappointed that my son wouldn't be able to enjoy all the great treats that come with childhood. At that point I decided to take my favorite recipes and convert them to be allergen-safe and delicious.


What is the most difficult part of reworking recipes to be allergen-free?

Baking is a science, and when you take out a crucial ingredient like eggs it can drastically change the taste and texture of the finished product. Even tweaking the measurement of one ingredient affects the overall recipe. Through lots of trial and error I found that some of the best substitutes are the cheapest and most natural, like water.


Did your children have a say in the recipes you created for this book?

Every recipe in the book is loved by not only my children but by the children in my neighborhood. They were my focus group and were completely honest in taste-testing my recipes. If they devoured one of my cakes, muffins and cookies without skipping a beat, I knew I had a winner.

Will people who do not have food allergies also enjoy the recipes?

I love desserts, and it was very important to me that every single recipe was utterly delicious. They had to taste as good, if not better, than the real deal. Time and again I hear from friends, family, and my blog followers that no one suspects they are dairy, egg and nut free.

What is your most requested recipe at home?

All four of my children have their favorites, but hands-down the most requested is my chocolate chip cookie recipe. I make these cookies at least once a week, if not more often.

Obviously, allergen-safe issues are a big challenge for families of school-age children. How have you and your family tried to meet that challenge?

When my son started preschool, it was very difficult to advocate on his behalf because there still wasn't a lot reported about food allergies. Oftentimes teachers and other parents were misinformed about the potentially life-threatening risk food-allergic children face. They wanted to have the freedom to still bring in cupcakes and cookies to class parties. Bringing unsafe treats to school not only excludes kids with food allergies but also puts their lives at risk. In my son's case I have always met with his teacher at the beginning of the school year to educate him or her about the dangers of food allergies. Together we develop a plan specific to his classroom that includes sending out a letter to the other parents about food allergies and providing snack guidelines. We've had a few hiccups over the years but continue to make progress on awareness.

Now that more children are getting diagnosed with food allergies every year, more school districts are adopting district-wide policies to ensure the safety of their students. This includes eliminating food from class celebrations, keeping up-to-date food allergy action plans in the nurse's office, and designating peanut-free areas in schools.

Your blog, foodallergymama.com, also addresses issues affecting families of children with allergies. What are some of the issues you’re trying to promote?

The biggest issue facing parents of food-allergic children is awareness in the school setting. We have to get better about developing policies to ensure our children's safety at school, camp, and even sports games. No children should feel left out because of their food allergies, and certainly their health shouldn't be compromised.

In addition to awareness at schools, we need to have updated policies at restaurants and airlines. There's still so much gray area when it comes to policies and procedures, like an airline stating they don't serve peanuts on a flight but then still allowing other passengers to open their own bags of peanuts. The government also has to allocate a lot more money to food allergy research in order to find more treatments and ultimately a cure. It's ridiculous how little money is given to food-allergy research projects in comparison to other medical issues.

Finally, my blog offers parents the opportunity to trade information and share stories. We all have felt isolated in our children's diagnoses, and it is enormously helpful to know that we are not alone in our efforts to keep our children safe.

Allergy Shots Reduce Children's Health Care Costs by One-Third

January 11, 2010 — Gina Clowes (Views: 434)

Allergy Vaccinations [aka Allergy Shots] Reduce Children's Health Care Costs by One-Third

ARLINGTON HEIGHTS, Ill. - Allergy immunotherapy, generally referred to as allergy vaccinations or shots, reduce total health care costs in children with allergic rhinitis (hay fever) by one-third, and prescription costs by 16 percent, according to a study published this month in Annals of Allergy, Asthma & Immunology, the scientific journal of the American College of Allergy, Asthma and Immunology (ACAAI).

"This large-scale, comparative effectiveness study of health outcomes clearly demonstrates the benefits of allergen immunotherapy for children with allergic rhinitis," said Cheryl Hankin, Ph.D., president and chief scientific officer of BioMedEcon, and lead author of the study. "Findings are even more impressive, considering the results were based on 'real world' healthcare delivery, rather than on treatment provided within a tightly controlled clinical trial."

The 10-year U.S. retrospective study is the first to show significant health care cost reductions in as early as three months and continued decreases over an 18-month period. The study compared Florida Medicaid claims data of 2,770 children with allergic rhinitis who received allergen immunotherapy to a matched control group of over 11,000 affected children who did not receive such treatment.

"This is great news, not only for families who will experience fewer out-of-pocket expenses for allergy medications, but also for the ever increasing national health care crisis,” said Linda S. Cox, M.D., immediate past chair of the ACAAI Immunotherapy and Diagnostic Committee and study co-author. "Because of the serious medical and economic consequences of childhood allergic rhinitis, early diagnosis and aggressive treatment need to be our priority."

Allergic rhinitis is the third most common chronic disease in U.S. children, affecting up to 40 percent of the population. Each year, allergic rhinitis accounts for two million missed school days and $2.3 million in health care costs for children younger than 12 years.

Allergen immunotherapy is the only treatment shown to decrease the risk of allergic rhinitis developing into asthma or other allergies.

"We are missing an opportunity to significantly improve health care outcomes and reduce costs when allergen immunotherapy treatment is not considered," said ACAAI President Sami Bahna, M.D., Dr.P.H. "We must be sure primary care physicians have the information they need to identify appropriate patients for referral and evaluation by an allergist."

Parents and others can take the ACAAI-sponsored Asthma and Allergy Relief Self-Test which reviews symptoms, identifies suffering and provides plans for relief at www.AllergyAndAsthmaRelief.org.

About ACAAI

The ACAAI is a professional medical organization headquartered in Arlington Heights, Ill., that promotes excellence in the practice of the subspecialty of allergy and immunology. The College, comprising more than 5,000 allergists-immunologists and related health care professionals, fosters a culture of collaboration and congeniality in which its members work together and with others toward the common goals of patient care, education, advocacy and research.

To learn more about allergies and asthma and to find an allergist, visit www.AllergyAndAsthmaRelief.org

# # #

Nancy E. Ryan, CAE

Director of Communications

American College of Allergy, Asthma and Immunology

85 W. Algonquin Road, Suite 550

Arlington Heights, IL 60005

847.427.1200
nancyryan@acaai.org

www.acaai.org

When Your Child is Prone to Illness and Allergies

January 7, 2010 — Gina Clowes (Views: 258)

By Susan White

There's nothing worse for a parent than having to see their child suffer a chronic illness, even if it is just an allergy that comes on when certain events and environmental conditions act as triggers. They know that there's only so much they can do to help their child and that beyond providing them with their medication and helping them ease the symptoms, they're helpless. If you're a parent with a child who suffers from a chronic condition, how do you know where to draw the line between mollycoddling them and not helping them enough? How do you know if you're inhibiting them from learning how to fend for themselves or if you're not doing all you can for them? If your child is prone to allergies or any other symptom of a chronic condition:

o The most important thing is to teach them to fend for themselves because you're not going to be around always to be of assistance. If they have asthma, they must learn to keep their inhalers within easy reach. If they need any medication in an emergency, they must learn to carry it with them at all times.

o Teach them to identify and avoid triggers if they are prone to allergies. Prevention is always better than cure.

o Don't fuss over them in the presence of other people, especially their peers and especially if they're old enough to know that they are ill, lest they feel inadequate and different. They need to feel self-sufficient and capable of taking care of themselves.

o Ensure that they know what to do when their condition takes a turn for the worse - either call their doctor or be able to communicate to friends who are with them that they need immediate medical attention.

o Help them to be as independent as possible, within the constraints of their condition. Being able to do things for themselves gives them a sense of confidence that does wonders for their attitude. They are more positive and avoid becoming depressed because of their condition.

o Don't treat them with kid gloves because of their condition. Be as normal as possible with them.

o And finally, talk to them about their condition. Very often, they find it hard to understand why they are affected so badly when other children their age get to live normal childhoods. Make them realize that they are strong enough to deal with the illness or allergy and that it need not be a limiting factor in their lives.


This post is written by Susan White, who writes on the topic of Ultra Sound Tech Schools . She welcomes your comments at her email id: smithcarol.311@rediffmail.com .

Or share your thoughts with us below! Thanks!

Organic Hair Care Products

January 5, 2010 — Gina Clowes (Views: 325)

I was fortunate enough to receive some lovely sample products from Jenerations baby. These mild products are sulfate and paraben free! Although some of the ingredients may not be appropriate for those with certain allergies (almond, coconut, seeds), they are all natural and are so gently on the skin and hair!

Visit www.jenerationsbaby.com for more information.

Milk Allergy Cure?

December 17, 2009 — Gina Clowes (Views: 3356)

Brett Nasuti is eleven years old going on 25. He may as well strap on his cape and put a big “S” on his chest because he is Superman to the allergy world.

Brett was the very first patient in the United States to undergo a novel way of desensitizing children to food allergens. In laymoms terms, the treatment consists of giving the patient anti-IgE medication (Xolair) to turn down or turn off the allergic response and then doctors gradually desensitize the patient to the allergenic food by giving small and increasing amounts of it over several months.

I had the pleasure of interviewing Brett’s mother Robyn Nasuti, an energetic and passionate mother warrior. She made the decision to enroll Brett in this study with care and trepidation. The story has a happy ending but it has not always been an easy road for Brett. Here is his story.

Please note that this type of densensitization cannot be done at home. Brett’s medical team monitored him carefully and his physicians were prepared to immediately administer life-saving medications in the event of an allergic reaction.

Gina Clowes: I’m so glad you got in touch with me! There is a lot of interest in your family’s story, so let’s start at the beginning. How did you find out about Brett’s allergies?

Robyn Nasuti: I’m happy to talk with you. I read your blog and my son Brett loves your book!

I have three children, Brett is the oldest. He is currently allergic to egg, peanuts and nuts. As a baby milk was his worst allergy. He was born with a cleft palate and so I pumped breast milk for the first few months. As I was getting ready to return to work, I decided to try [cow’s milk based] formula. He cried and cried, and spit it out. I just thought he didn’t like it. We tried it again the next day and it was worse. His little body was covered in hives so I drove him to the pediatrician office who confirmed an allergic reaction.

Gina Clowes: Did they test him for allergies?

Robyn: No, we were told to switch to soy formula. We tried that and he was fussy with that too. And, it made his skin break out with eczema. Our doctor urged us to try a different brand soy formula. We had no other choice so we gave him a different brand. He was covered in eczema until he was 10 months old.

At that point, a nurse had reviewed his history and based on the fact that he had multiple systemic reactions (including one that landed him in the ER after one bite of my husband’s birthday cake) she suggested we have Brett tested for food allergies.

Gina Clowes: What did you find out?

Robyn: We got the phone call on Brett’s first birthday and they rattled off a list of his allergies: milk, beef, lamb, barley, soy, corn, oats, peanut, egg, tree nuts and more and told us we needed to get an Epi-Pen right away.

Gina Clowes: The “allergy avalanche” We experienced something similar when we went to see a doctor at Mount Sinai when my son was one year old. I was hoping he’d say I was just a nervous mom but instead he confirmed over a dozen food allergies. It’s a lot to take in.

Robyn: Yes, and we couldn’t even give him a piece of his own birthday cake because he was allergic to it! It was hard to realize we had been feeding him foods that were causing his skin to be so bad. He was constantly itching and didn’t sleep well because these foods were in his diet.

Gina: Wow, but at least you finally found out what could help him feel better. So fast forward to more recent years. How is Brett doing?

Robyn: Food allergies are still a challenge. I not only have Brett with allergies and asthma but my younger son Nicholas, 5, has even more allergies than Brett. My daughter Taylor, 10, has no allergies. It’s been hard. I’ve gotten “the phone call” that all allergy parents dread: the one that says “Go meet the ambulance at the hospital!”

Brett is doing so well right now, but it has not been easy.

Gina: What has been hardest part?

Robyn: The hardest part is the social aspect.

Gina: I ask this question of every allergy mom, and I always get the same answer–that the social and emotional parts are the hardest. What specifically about socializing has been hard for your family?

Robyn: Being left out. When Brett was younger there were so many gatherings. There would be food everywhere, people touching and kissing him. He’d leave every event with huge hives. We finally had to stop going.

Gina: That is what is hard–when it seems that people are prioritizing food over people.

Robyn: Yes. It has been hard for our family to be social. For Brett, we have to have play dates and sleepovers at our house. I think he missed out on that when he was little.

Gina: And school?

Robyn: Elementary school was fabulous! They were cupcake free and they encouraged non-food celebrations.

Gina: That is wonderful. I often wonder how public schools get away with excluding allergic children from classroom celebrations and activities. It’s great to hear about inclusive schools.

Robyn: Now in middle school cupcakes are allowed again. There is no consistency. In 4th grade, Brett had a lot of anxiety about his allergies as many food allergic children do.

There have been incidents of bullying over the years. He was itching one night (in 3rd grade) and asked me if it could have been from a boy who poked him after eating peanut butter. A year later a boy thrust a peanut butter sandwich in Brett’s face.

The most recent incident was one where a boy threatened to feed Brett “a peanut butter sandwich with a side of jelly.” I asked Brett what he did and he said “I just had a very sad face because I thought it was kind of like him saying he’d stab me at recess.”

Gina: It’s sad to think of this sweet boy who already has to deal with the reality of food allergies and on top of that, he has to worry about the bullies.

Robyn: Yes, but things are improving because he’s a local celebrity due to the milk study!

Gina: That’s terrific! We should talk the study. Let’s start at the beginning. How did you find out about this research?

Robyn: Dr.Lynda Schneider is amazing! In November of 2008, I took my younger son Nicholas to see her. I was so fed up with food allergies. I said, “Tell me there is going to be a way to fix this.”

She said that they were beginning a new study where they’d use Xolair to turn off the allergic response and then desensitize the patients. After reviewing the criteria, and reading more on Xolair, my husband and I decided we wanted our son to take part in this. We were actually discussing having Nicholas participate and Brett overheard us and chimed in “I’ll do it.” Dr Schneider said [that they weren’t going to be able to do siblings] we’d have to choose.

Gina: That must have been a difficult decision knowing that you’d have to choose which of your children could take part in this incredible research.

Robyn: I knew that there were a lot of shots involved so Brett was a more logical choice. Nicholas is so young we worried about giving him foods we had told him to avoid. Brett was old enough to understand what the benefit was. And if for whatever reason, if it didn’t work, he could go back to avoiding milk.

We took Brett in January to make sure he qualified.

Gina: To see if he met the criteria to be included in the study?

Robyn: Yes, they had to find out if he was allergic enough! They did blood work and skin testing and he was a candidate.

Gina: Was that scary?

Robyn: It was for Brett, but we worked out a system before every step in this process; just a way of looking at our feelings. We’d ask each other five words about how we were feeling and we did this throughout the process. I wanted to make sure that psychologically, he was okay. One of his five words was “excited” so although he was nervous, he wanted to move forward.

I was actually pretty comfortable. Dr. Schneider and her team are the best ! And from what I read about Xolair, and the research, it actually seemed safer to me than allowing him to continue on in life constantly at risk for reactions.

On day one, they did skin and blood work again and found out he was still highly allergic. So he started Xolair–one shot in each thigh. The medication is very thick. They had to use two hands to push it in! The next time, we used a numbing cream at the injection site.

He had the Xolair every two weeks based on his weight, age and severity of his allergies. Some children will receive the shots once per month. It depends on a lot of factors, I’m told.

He had Xolair from March until June.

Gina: How would you describe the effect that Xolair had on your son?

Robyn: In a word-Unbelievable! Within two or three weeks, it was like somebody flipped off a switch. Usually he bumps up his asthma meds and doubles his antihistamine to keep him healthy in March, which is his worst month. Not this year. And by April, he was completely symptom free!

Brett was able to visit with friends who have dogs, cats and a guinea pig! And, he slept over! We called everyone we knew and had him sleep over because he had never been able to do this before. Prior to Xolair, he’d just walk in the door with a dog or a cat and need antihistamines.

But it was just as unbelievable when he came off of the Xolair. Within a month, his symptoms returned.

Gina: So Brett was on Xolair for 8 weeks before you started with any milk?

Robyn: Yes, on week 9 we started the desensitization. I was not too nervous because I knew that his allergies were turned off. One of my five words was ‘euphoric’ because we were about to experience something that I thought we’d never see.

Brett was nervous that morning. He had trouble sleeping the night before. He ate too much and thought he was going to get sick. Some of his words were “nervous, excited, anxious”

My husband was apprehensive but he trusted me. He did say “We’re feeding him something that could kill him.” I said “We’re in a hospital.” They were very conscientious and I was very comfortable that they were doing everything they could and would keep him safe.

So on June 4th, at 7 am in the morning. They hooked Brett up to the IV’s and started with 1 ml of milk.

They watched him for 15 minutes, and then they increased the dose. From 9:00am to 4:30pm they kept increasing the doses. At the fourth dose, they thought he had a hive on his arm. They administered Benadryl and stopped the protocol temporarily. I thought they would stop for the day, but they kept going. They wanted to get to 1.1 oz by the end of the day. In retrospect, they think the hive may have been a bug bite. So, he reached the top dose for the first day and he ate a foot long submarine sandwich, and they kept him overnight.

The next morning they gave him the top dose of 1.1 oz and he tolerated it with no problem so they sent us home with a bottle of Carnation premixed instant milk.

Gina: So that was the end of the initial part of the desensitization?

Robyn: Yes, every Thursday we went back and they’d hook him up to an IV and increase the dose of milk by 12.5%. I was not too worried because his allergies were turned off. We continued with this and Brett never had a reaction.

On July 23rd he had his last Xolair shot.

On July 30th he had his last increase in milk, and then, he went into maintenance.

Gina: What was that?

Robyn: Every day, we gave him 80 cc’s or 2 ounces of milk. The Xolair would be half out of his system within three weeks [from the last date it was given to him] and by September 1st there would be no more in his system.

It was weird that we were giving him milk knowing that the Xolair was not there. And the scariest thing was that I had to now send him back to school knowing that he had no Xolair to protect him.

Gina: Everything was okay though.

Robyn: Yes. Then in September came the blind challenge. One day he would be given cow’s milk and the other rice milk. We didn’t know which was which at the time, although Brett was sure that he got the cow’s milk on the first day. He passed both days!

Gina: So that was it?

Robyn: No, then we had to do the open challenge. They gave him a regular carton of milk, 8 oz. He drank it down. He loved it. He was so happy!

Gina: And now?

Robyn: Two days later we had a giant pizza party! More than 80 people came to watch him eat his first pizza. Dr Schneider said no more than two pieces of pizza. We didn’t want to overdo it. He loved it! And now he eats dairy every day.

Gina: How have your lives changed?

Robyn: Well, I still have Nicholas so we have to be very careful. Brett and Taylor have to use glass when they have dairy and Nicholas uses only plastic.

And the funny thing is Brett does not really like the taste of cow’s milk now. He prefers rice milk. He has to have dairy everyday and some days he actually forgets! It will be close to bedtime and I’ll have to remind him to have some crackers with cheese.

The best part for Brett is the social aspect. Being able to eat dairy snacks at school or better yet, being able to buy pizza at lunch or to have it at parties has been wonderful for him.

Gina: What’s next?

Robyn: Brett is writing a book for tweens to help them deal with food allergies. He’s thinking of calling it: Brett’s Got Food Allergies - Deal With It!

The doctors asked him which food they should do for the next study and he said peanut. He said, “I want to be in the study so make sure you call me first!” We can’t wait for that day!

Gina: I hope Brett is first in line! Please come back and tell us all about it!

For more information, please visit Xolair Treatment for Milk Allergic Children or contact contact the research coordinator Irene Borras at 617.355.6127 or via email at irene.borras@childrens.harvard.edu

Robyn’s Company Nasuti’s Notes creates communication plans to help educate family and friends to protect your child. Communication plans include: chef cards, school or family newsletters, and babysitter at-a-glance sheets. For more information, please visit www.foodallergyplans.com


AllergyMoms logo by Karen Ramirez. Powered by XOOPS 2.0 © 2001-2003 The XOOPS Project
Theme design by Scribbles Graphics