Milk Allergy Cure?
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
December 18, 2009 @ 12:28 am
OMG, could this really be true????? This could change so many children’s and families lives, including our own. I would interested to know if everyone who participated in this study had such favorable results. What are the drawbacks? Could his allergy return? This is so amazing for those of us who struggle daily with food allergic children and keeping them safe.
December 18, 2009 @ 12:34 am
WOW!!!!! I am very interested in what this could do for our family. I am doing more research on this. It would be so incredibly awesome to have the worry of allergies behind me.
December 18, 2009 @ 12:35 am
Thank you for this story. I have a 4yr. old severe milk, peanut and other nuts, egg allergic child. We are unable to bake cheese or even go to a pizza joint or other steamy cheesey, milk place. He had a reaction when I was waiting for my coffee at a coffee house in the middle of the winter I was so frightened that I chucked my coffee into the snowbank and administered his medicine.
I am filled with emotion upon reading this article. I am so glad things have gone well for Nicholas. I would love to hear how he is doing now. If he is fully desensitized and his blood work is antibody free for the milk antigen. Thank you again, your newsletter is a light in the dark some-days.
December 18, 2009 @ 12:56 am
How can i sign up my son? I, too, was very emotional while reading this article. Thank you, allergymoms for always sending such great information!!
December 18, 2009 @ 12:59 am
This is amazing! So my question is how long does it take to get this treatment approved for those of us who don’t live in the area of the trial? Any estimates on when anything will be available?
December 18, 2009 @ 1:16 am
thanks again for this wonderful allergy information blog!
December 18, 2009 @ 2:19 am
What an uplifting story! I have a four year old with allergies to milk, beef, pork, eggs, and peanuts…as well as pollen and animals. The allergies then lead to asthma. So scary! Can’t wait to research more about this and question my son’s doctor. This drug sounds like a dream come true!
December 18, 2009 @ 3:01 am
It really sounds amazing! Congratulations and my respects for making a great decision that could have implied some serious risks. My question is about his asthma symptoms after the xolair effects gone and him still being allergic to other foods. Is his asthma more controlled? Or still the same?
December 18, 2009 @ 3:07 am
Tears are actually streaming down my face after reading this story. I’m so happy for Brett and Robyn… what a relief that must for both of them to have one less thing to be anxious about, to be scared of…
Both of my sons are ana to peanuts and tree nuts, and holiday parties and birthday parties are just so scary and anxiety-provoking for me. Thank you for this story - this gives us all hope!
December 18, 2009 @ 5:20 am
I have a 17 year old with severe allergies to eggs and milk. here in Belgium it’s not as common as in the US so it was very difficult to explain the problem to others. The social aspect is still a big problem, so I hope this therapy will be available to others soon. Do any of you have teenagers with food allergies. I can only find info from moms with smaller kids with allergies.
December 18, 2009 @ 5:57 am
WOW. Just…..WOW. They are my heroes!!! To know that someday my son may not have to worry about eggs, dairy and nuts is almost too good to be true.
I’ve heard of a similar study w/ peanut flour and that you do have to eat a “maintenance dose” every day to keep your body non-allergic. In fact, that’s why our allergist recommends our son never have peanuts even if he tests ok–because it’s one of those very touchy allergies. It’s the one that got him an epipen in the first place.
Thank you so very much for such an amazing article and HOPE. It’s a lovely Christmas gift :))
December 18, 2009 @ 8:58 am
Thanks so much for the story of hope! Now let’s push for insurance companies to start covering this type of treatment.
December 18, 2009 @ 8:58 am
amazing. thank you for publishing this.
December 18, 2009 @ 10:04 am
Way to go! My son Zachary, 13 years old, has been on Xolair for appx. 2 1/2yrs. (severe peanut allergies & asthma). I had gone to my son’s allergist asking for anything to help lower his allergies. Xolair controls the asthma and seems to also reduce the allergies as a bonus side effect. I cannot remember the last time he needed to use his inhaler - his asthma is incredibly controlled. There are potential serious side effects though! Anaphylaxis is one. This fall he even had the flu (H1N1?), I thought ,oh no, here we go , as I braced for the worst, but he breezed through it with ease. He even did better than his sister who has no asthma. There was a doctor from Pgh.’s Childrens Hospital Allergy Dept. who expressed interest in presenting Zachary with a peanut challeng. But after weighing the pros & cons he decided that it would not be worth the risk. I cannot find anyone who will challenge him with the peanuts. I will definitely check into this. There are co-pay assistance programs to help with the $$$$. Check it out!
December 18, 2009 @ 10:14 am
Thanks a lot brett and robyn for doing this . I cried while reading this .you are real heroes to do this . You have shown all of us allergy moms that there is a hope and you courage is an inspiration for all of us….
December 18, 2009 @ 10:55 am
You should be so proud of your son! My ten year old son has severe allergies to milk,eggs,soy,shellfish ,fish, treenuts,and peanuts. I feel Milk is the worst and I am so happy to hear of this trial it gives me so much hope. Would love to hear more of how your son is doing.
December 18, 2009 @ 10:57 am
This train of thought has been out there for some time. Our allergist suggested this 2 years ago. Xolair has only been approved for asthma so this is an off-label use. I think we all need to be pushing forward on this-asking places such as National Jewish Hospital when they plan on beginning the trials.
December 18, 2009 @ 11:21 am
This is such an amazing story! What a brave boy! I bet you are a very proud mother. My daughter has food allergies; she will be 5 in January. She is such a tough little girl and has never shown any signs of sadness in the fact that she can’t eat what her friends eat. Sometimes she will make a comment that she wishes she could eat a peanut butter sandwich too though. She has allergies to gluten, wheat, eggs, peanuts, soy, and milk. (In order from most severe to least) She is currently taking allergy drops to build up her little system but the food drops are hard on her. Eggs make her break out into hives and she gets a fever. No treatment for wheat & gluten. She is a trooper though. I have never heard of the medication Xolair. I wonder if it would help my little girl.
Thanks for your story. It’s a great one!
December 18, 2009 @ 11:28 am
Brett sacrificed his own life to take part in this study and brought promising hope to all children who have food allergies…He’s a HERO to us all!!!
December 18, 2009 @ 11:44 am
Way to go Brett! And Robyn, how wonderful for you to share this story with us.
You gave us the most wonderful gift this holiday season: HOPE!!!
Brett–You are SUPERMAN!!!
December 18, 2009 @ 1:12 pm
This is a wonderful story. I would love to hear more about when and where they are studying this. It was very brave of Robyn and Brett to go through this and even better that they would share their story with the world. They could not have known how it would turn out yet they shared anyway. Excellent news.
December 18, 2009 @ 1:20 pm
Thank you all for your kind words. Brett is “our” hero and is so happy to have been part of this. Brett will send a response when he gets home from school later today(he’s buying pizza for lunch).
I believe the most important message is that of hope. When he was diagnosed we were told there was no cure. Today, I have hope that Brett and Nicholas may live an allergy-free life someday becuase of the wonderful food allergy research being conducted all over the world.
One of the risks with taking Xolair was chance of anaphylaxis. Brett was monitored for 2 hours after each injection to make sure he didn’t have a reaction. The Dr.s had 6 intervenous medications sitting in his room to stop any adverse reactions (we never had to use them).
We are told his allergy could return if he stops drinking dairy so we are very careful to make sure he gets at least 2-4 ounces per day. Which is a challenge for someone who hasn’t had a drop for the last decade. He’s gained 5 pounds since completing the study in September.
Brett is the only one so far to complete the study. There are several others who I believe are close to the final challenge. There will be 8 children in all who complete this phase. Then the research team will go back to the FDA to appeal to move forward to a larger study. There are several phases to complete before this protocol becomes an approved treatment for Food Allergies.
December 18, 2009 @ 2:04 pm
Congratulations Brett and family! What an incredible journey, thanks so much for sharing this!! All the best!!
December 18, 2009 @ 2:49 pm
Thank you SO much for this information! Brett, you and my son have much in common. I have already contacted the study co-ordinators to see about his eligibility for a future trial. Thanks for giving me HOPE that my son could some day lead a more normal life. He’s 9 now, and just ready to hit that age where he craves more independence - the danger zone for kids at risk of anaphylaxis…
December 18, 2009 @ 3:44 pm
Such an amazing story. Brett– you are so brave and are giving hope to so many kids with food allergies. Thanks you Robyn & Gina for getting the word out about this very hopeful study.
As the mother of an almost 18 year old, ana peanut allergy daughter, I saw so many similarities in Brett’s story. It is such a difficult issue for kids. One thing that helped us was to have 1 or 2 good friends who were completely understanding of the severity of the peanut allergy and respected our daughter. Even in elementary school, kids would be on the lookout for peanuts and want to protect her. I realize when reading Brett’s story how luck we are that she is only allergic to peanuts and soy.
Now as she graduates from HS and heads off to college (and trust me it gets here sooner thatn you can imagine!)–I have a whole new set of fears. I believe that she has become the person she is today due to dealing with her food allergy all of her life. It shaped her personality. She even wrote several college admissions essays on the topic of dealing with her peanut allergy! I really hope the next food the study works with will be peanuts.
Please keep us posted.
December 19, 2009 @ 12:04 am
With tears in my eyes, I just finished reading your article. What exciting, new research that can enable a child with a severe milk allergy to consume pizza, milk, and ice cream!
As a mother of an eight year old daughter with food allergies, reading about this research and Brett’s outcome was very emotional and truly inspirational. My daughter, Alexandra, has been allergic to dairy since she was an infant. Her reactions have typically included hives, “itchy” throat or tongue or blothcy skin. In addition, she is anaphylactic to peanuts and most likely tree nuts. She has only needed Benedryl for any accidental milk exposures but her one exposure to peanuts resulted in a trip to the Emergency Room. We now have an Epi-pen on us at all times.
As thankful for all the blessings we have in life, Alex’s food allergies impact our daughter’s quality of life. She is unable to eat pizza, ice cream or have a glass of milk. Each time she goes to a friends house, a birthday party or any other event, we must be certain it is “safe” and that she has an alternative to eat. She has never been able to buy a school lunch or eat a “free” cookie from the bakery counter at the grocery store. Every visit to a restaurant requires an extensive conversation with the Manager about what she is able to eat. Through it all, she remains more understanding than any eight year old should ever have to be. Even though she handles it with the utmost maturity, it is her dream to be able to eat regular pizza, have some mac and cheese like all her friends and finally be able to get something other than a popsicle from the ice cream man.
I’m sure her/our story is like the countless others that live with food allergies every day. While we are so very thankful that she is healthy and lives a wonderful life, it is undescribeable to think about the improvement to her quality of life if her food allergies (in particular, her dairy allergy) could be treated or managed in some manner.
Thank you to brave kids like Brett and his parents for doing such research. We pray that we have the opportunity for Alex to live her life one day without the impact of her food allergies!
Julie
Mom to Alexandra, 8 years old
December 19, 2009 @ 1:26 pm
wow. where do we sign up?
it would be so great to be able to be a s social as we wanted… to be able to shake hands and not worry about the dairy on them.
thank you for posting this. xoxo
December 20, 2009 @ 11:38 am
Thank you everyone. I am very thankful that I took the risk. My dream has come true. Every day I would pray that one day I could drink milk! So after all these years this study came out and we jumped at the chance. All the painful injections were worth it. I beat my milk allergy with this trail, and look forward to a peanut trail in the future so that one day I can be allergy FREE! In the begining, I was allergic to sixteen foods slowly I out grew of most my allergies - by age nine. People might say it is bad to have food allergies, but becuase of my food allergies I learned to be stronger.I joined karate and now I am a black belt so I can protect I myself. No one bullies me any more “smart choice” I said.
Thank you for responding Brett Nasuti
December 20, 2009 @ 12:10 pm
With tears in my eyes I finished your article and had to respond. Thank you Brett and your family for being so brave. As mother to a 4 year old who is anaphylactic to milk, and allergic to eggs and peanuts, your story was like reading our own in some ways. We have a wonderful support system but it has been a long and slow three year process and we have much further to go. Because of you we continue to have hope that someday our son can live allergy free and be safe in this world. Thank you and God Bless All of You!
A & B
December 20, 2009 @ 12:53 pm
Robyn/Gina,
I am so happy for Brett and your family! What a dream come true! Thank you so much for sharing your information via this website. I am (like many others) trying to gather as much information as possible so that we can make the best decision possible for our daughter when this treatment becomes more widely available, as I believe it eventually will. As a pharmacist I am concerned about the increased risk of certain cancers associated with the use of Xolair- 0.5% vs. 0.2%…small but statistically significant nonetheless. Did your physicians share any information to help you put this risk in perspective that you can share? Gina, could you please ask your physician contacts about this? Thanks, please tell Brett he totally rocks and he is very brave! We are so proud of him, can’t wait to share his story with my daughter.
December 20, 2009 @ 8:33 pm
Hey Brett,
Thanks so much for writing. We definitely want to hear more from you!
And keep us posted on your book too. As you can see, you already have a fan club!
Phooey to those bullies too! You showed them!
And Patty,
Yes, we will certainly see if we can have that issue specifically addressed.
And I agree: Bretty totally rocks!
gina
December 21, 2009 @ 9:46 am
Hi Patty,
I can only answer why we made our decision. A medical professional will need to address the statistics you mention above. We read the information on the risks of Xolair and made our decision becuase we knew Brett would onlybe on Xolair for 16 weeks. Previous studies (from what I understand) are on long term use of the drug. I hope that is helpful. Good luck!
Robyn
December 22, 2009 @ 12:10 am
Wow!!!!! What a great Christmas present to us all. I am so happy to hear about Brett’s trial. It gives me such hope. I too have a 4 year old boy who has a very limited diet due to anaphylactic reactions to food . He is allergic to milk, eggs, nuts, bananas, onion, garlic, chicken, fish, wheat, & several others. Thank you so much for sharing this wonderful news. God Bless!
December 22, 2009 @ 11:53 am
This was such an uplifting story!! As the mother of a 6 yr old daughter with peanut mustard seed and rapeseed(canola) food allergies I am so thankful to read this hopeful story. God Bless Brett and his Mom Robyn for having the courage and the fortitude to go and do the study. They truly are pioneers!1 They helped so many people while improving their own lives. And Brett hats off to you about the bullies not mattering anymore. You have more gumption than them combined for sure!1 Karate is excellent for building confidence. i hope that my little one will be blessed to have this cure so that we can have a chance to enjoy the same experiences that the rest of the non allergic population is able to do w-o fear of a reaction that can harm the food allergic individuals. It would be nice not to have to worry about peanut and mustard residue for it seems to be such an American love affair! Gina great job with this interview ! You are a hero tfor your helping to spread the education and hope of a brighter future possibly one without food allergies.
December 22, 2009 @ 2:27 pm
wow!!! what a wonderful story from a brave boy and his family! i can only hope that more is found out for the future so that someday my 10 year old son can be free from his dairy allergy too. i cannot adequately express the joy i felt reading this interview, and relief that brett is doing well after this experience. i am so glad that he can enjoy life and have new experiences without the fear and worry that come along with the food allergies(got to eat pizza?-that is wonderful!!!). I hope this works for others and becomes a potential elective pathway to beating food allergies in all applicable people-there is hope after all(I was really starting to give up after 10 years of my son’s dairy allergy-still going strong and NOT outgrown, but he seems happy as he can be with all things considered-just a difficult thing to cope with in general). thanks again SO much for sharing this with us!!!
December 23, 2009 @ 5:49 pm
AMAZING!!! My hands are shaking and I’m crying like a baby. Thank you for the story, I’m looking into it immediately. Merry Christmas to all!
December 27, 2009 @ 5:36 pm
Wow, what an amazing story. I am so excited by all of the possibilities this opens up for our family…..five kids, three with significant food allergies. Our whole family is significantly impacted by food allergies….every day. I will be following this with much anticipation!!!
Thanks, Gina for a great newsletter, and thanks Nasuti family, you have given us all a great gift!!!!
December 30, 2009 @ 4:46 pm
I am in tears. I am going to look into everything right now. Congratulation Brett, you are a inspiration and very courageous.
January 1, 2010 @ 5:29 pm
I had tears streaming down my face while reading this article. It’s stories like these that give me hope that some day my little guy (he’s four and severely allergic to peanuts, and his asthma also flares up with reactions), and all others who suffer from food allergies, will be safe in a world where food allergies are non-existent.
The social and emotional aspects are by far the most difficult. We tend to stay home now rather than visit at friend’s homes as he’s had reactions even when peanut butter was not ‘physically’ present. (Presumably from trace amounts on toys or furniture…) We also no longer stay after church to socialize when coffee, juice and food is served due to the very same risks. He broke out into hives while sitting at a table at church when food wasn’t even present, this past year, so we now try to avoid the basement (where food is served).
The risks are all around for those severely allergic and stories like this are a gift! A gift of hope to all who worry and pray for their food allergic loved ones.
~ Jennifer
January 4, 2010 @ 3:32 pm
Hi Gina ,
I canot beleive that there is someone like my son . He was born with the same types of food allergies and my life was changed for ever . He is 8 yrs old . I had to do everything that u are doing for your son . He is on restricted diet . I think I would like to talk to u one day . He goes to school ,He is better now than few years ago . He has a peanut free table . BIRTHDAYS ARE VERY HARD FOR THEM . HE CAN ONLY EAT 20 FOOD S . pl email me ,so we can talk more .
ANN
January 25, 2010 @ 1:11 pm
I cried while reading this article. I love this interview. Brett and his mother are heros!
So brave to go through this and so wonderful that they would share this too.
Please tell us more. What is the next step? Where and when will this become available? With multiple food allergies, my son cannot take 3 years to become tolerant of all of his allergies.
January 27, 2010 @ 2:33 am
First of all….CONGRATULATIONS to Brett and his family. What a great news that one is.
I’m so hopeful now for my son.
I have a 2 and a half year old son with Milk, eggs, Peanuts, Soy, Wheat and others allergies and this article just gave me SO much hope.
Thanks for sharing your history with us.
God Bless your family.
January 27, 2010 @ 6:20 pm
While I am excited to read the personal experiences of a study participant, I am concerned with how this was presented. This study is VERY promising, and gives me hope for my two highly allergic children. However, the researchers themselves say that there is no way to know whether the milk tolerance will last. I fear that some people (hopeful parents or even some doctors) will read this and think that Xolair is a magical cure with no risks. In reality, this drug has some potentially serious risks including causing anaphylaxis itself in enough patients to require a black box warning. Please take the time to fill out this entry with balanced information about the medication that was used in this study.
February 14, 2010 @ 12:47 pm
Hello Kendra,
Thank you for your comments. I understand your concerns. We were made aware of the risks of Xolair and made a very careful decision to allow our son to have it for ONLY 16 weeks. He is NOT on Xolair permanently which is a common misperception. I am also aware that virtually every drug on the market has risks and side effects associated with them and every person taking medication weighs those risks carefully. Becuase of the risk of anaphylaxis Brett was observed for hours after he received each shot and did fine.
If no one ever took a risk there would be no cures for anything. So while I’m sorry this may not be the solution for you. It was a miracle for my family and does provide hope where ther was none before. There are so many promising other therapies and I’m confident you’ll find one that is right for your family.
Brett has been enjoying pizza and cheese for 5 months (with no medication) now and has his final study visit next month when Drs. will determine if he needs to continue to have milk protein daily. Visit clinicaltrials.gov for more details on teh study and risks.
Good luck on your journey.
February 14, 2010 @ 1:37 pm
As always, thanks for responding Robyn! :o)
There are risks to any treatment but we should all remember that there are also risks to doing nothing!
Our food allergic children, especially as they get into their teen years, are even more vulnerable.
There is no way that any article can convey all of the risks or benefits of any treatment, which is why we provide links so that interested parents can explore their options.
March 27, 2010 @ 1:24 am
This is the second time I read this article. The first was when Allergy Mom first published it, and now again when it was mentioned in the last newsletter. Like many of the other parents above, I could hardly read this the first time with tears obscuring my vision. Like so many, my husband and I are so encouraged by this wonderful result. We have three children, and the first two are food allergic (10 year old: milk, eggs, nuts, potato, coconut, some beans; 8 year old: milk, eggs, nuts, soy, fish, some beans) Having read it a second time, there have been many more readers who’ve shared their stories. Thank you all for posting your stories. I had always thought we were one of the only ones with kids with such a laundry list of allergies. It’s nice to know that we’re not alone, and that there is hope.
June 16, 2010 @ 3:02 am
Thanks Brett for being so brave.
There must be many who are watching this page.
Hey All,
My son age 6 has been having milk allergy since he was born. He would break out into hives with even a touch of milk. he could not even tolerate 1 spoon of milk.
But I went through the Ayurveda way. - and whoa - he is cured. He is drinking milk now.
After just a few months of treatment - 3/4 months.
He drank pure milk 200ml and no reaction !
We tried all milk products - butter , cheese , paneer.. and no reaction.
Must spread this news around.
Ayurveda is a extremely safe and tried and proven and ancient form of medicines practised for hundreds of years. All medicines are safe.
Do reach out to me if you need more information, that is the least I can do to help more children towards this cure.
Prachi
June 16, 2010 @ 3:31 am
Reach out to me on prachi dot solomon at gmail dot com on how ayurveda worked for my son Dhruv’s milk allergy
July 29, 2010 @ 6:56 pm
Good job Brett… you gave some hope to all the families who have kids with food allergies.