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