A cure for milk allergies? Part 1: Meet Brett, whose severe allergy to milk may be cured

by Erin Graham on August 25, 2009

This is the first in a series of videos about Brett Nasuti, an 11-year-old Children’s Hospital Boston patient who was born allergic to 15 foods. Brett is the very first Children’s patient to go through a milk exposure desensitization trial—the first of its kind in the country—which could cure him of his severe milk allergy. In this video, you can watch Brett and his mom, Robyn, talk about what it’s been like for their family to live with his life-threatening condition and their hopes for the trial’s outcome.

Stay tuned each week to follow Brett as he goes through the study, during which he drinks more and more milk after getting injections to ward off allergic reactions. You can see him take his first-ever sip of milk and hear him talk about what it’s like to live with a life-threatening allergy. You can also watch Robyn shop for her two kids with food allergies (she cooks three different dinners each day for her family) and hear Brett’s classmates talk about what they’ve learned from him. Plus, check back to see Lynda Schneider, MD, the director of Children’s Allergy Program, discuss the shocking rise in food allergies and how this trial represents a path to a potential cure.

Also, in October, we’ll publish a story about Brett and the study in Dream, Children’s magazine for patients and families.

Do you have food allergies or have a child with them? How have they impacted your life?

Have thoughts about why there’s been such a dramatic increase in food allergies in recent years? Share them here.

Check out the second video in the series, where Dr. Schneider talks about how the clinical trial works.

87 comments

  • Laura Fitzgerald

    This story is amazing! My 5 year old daughter has a severe dairy allergy and I am very interested in participating in the study. We live in CT, so traveling to Boston would not be a problem. Can you please let me know how she can become a candidate? Thank you!

  • Pam

    Has this study opened up to other participants? How can I get more information on participating? I have a 4 year old with a severe milk allergy and live locally to Boston. Thank you.

  • http://www.childrenshospital.org Erin Graham

    Hello,

    Yes — if you live near Boston and are interested in participating in our study, you can call our study coordinator at 617-355-6127.

    Erin

  • http://www.childrenshospital.org Erin Graham

    Hi,

    Our study coordinator can give you information on the trial at 617-355-6127. Good luck!

    Erin

  • hema

    Hi

    Does this program apply to other allergies like legumes, as my daughter is allergic to beans and we are vegetarian…she is so sensitive to it that if she smells or gets the cooked vapours in her eyes, she becomes congested immediately. Upon ingestion, her reaction is usually vomiting, intense cramping, diarrhea and lip/tongue swelling and tingling. This treatment that Brent has undergone…is it similar to EPD (enzyme potentiated desensitation)…and is there a place in Toronto that can do something like this

    Thanks Kindly

  • Carolyn Haddigan

    How old does a child have to be to participate in this study? My son is 3 1/2 and has a milk allergy which seems to be getting worse. I’m so grateful that this research is being done.
    Thank you.
    Carolyn Haddigan

  • http://www.childrenshospital.org Erin Graham

    Hi Carolyn,

    I’m not sure how old children need to be, but if you call this number, someone directly involved in the study will be able to talk to you about it: 617-355-6127.

    Erin

  • jennifer

    When will you begin this same type of program for children with peanut/tree nut allergies. My son is 6 and was diagnosed with food allergies @ 15 mos. He had milk, egg, soy, peanut, tree nut, green beans, peas, shellfish. He has since outgrown everything except peanut, treenut, shellfish.

  • Allison Stanly

    I have an 8 year old son who has a life-threatening milk allergy (Jacksonville, FL). I am so encouraged to hear about this study. My heart is filled with gratitude…for both the doctors and the participants. Brett is very courageous! Watching these videos brought tears to my eyes. What a victory! Thank you for conducting this research!!! My hope is that the research not only has greater success…but that the research is extended to areas beyond Boston. Thank you for sharing this story of hope!

  • Pingback: A Shot to Cure Milk Allergies? | Bottle Snugglers Blog

  • Anonymous

    How about if he is allergic to milk- Don’t give him any milk!

  • beatricebellamy

    How about if he is allergic to milk- Don't give him any milk!

  • mom

    I hope this is a joke what you just wrote! Obviously, you don’t live with a child who is deathly allergic to milk or even know what it’s like to have a child that has never tasted ice cream or been able to eat a birthday cake at a birthday party. You are obviously ignorant !

  • mom

    I hope this is a joke what you just wrote! Obviously, you don't live with a child who is deathly allergic to milk or even know what it's like to have a child that has never tasted ice cream or been able to eat a birthday cake at a birthday party. You are obviously ignorant !

  • Julie

    God Bless You for this research!! We live in MA and don’t know how I’ve missed this going on. My son is 11 yrs old and severely allergic to milk protein and also has a peanut allergy and slight egg allergy. We would love to participate in this study. Are you still taking patients? Congratulations Brett..You are a very brave boy and have made history by paving the way for other people with your same allergies. God Bless You and your family too. We cried with joy as we watched your videos and know exactly how you have felt all of these years not having ice cream or birthday cake or pizza….Enjoy them my friend…you deserve them !! Julie

  • Julie

    God Bless You for this research!! We live in MA and don't know how I've missed this going on. My son is 11 yrs old and severely allergic to milk protein and also has a peanut allergy and slight egg allergy. We would love to participate in this study. Are you still taking patients? Congratulations Brett..You are a very brave boy and have made history by paving the way for other people with your same allergies. God Bless You and your family too. We cried with joy as we watched your videos and know exactly how you have felt all of these years not having ice cream or birthday cake or pizza….Enjoy them my friend…you deserve them !! Julie

  • http://www.foodallergyplans.com/ Robyn Nasuti

    You are brave to write such a tasteless response. If you had the chance to live one day in our world you would learn empathy. Some day you too will be challenged beyond your wildest capability and I pray for your sake you find the courage and determination that every food allergic parents wakes up with each morning.

  • http://www.foodallergyplans.com/ Robyn Nasuti

    You are brave to write such a tasteless response. If you had the chance to live one day in our world you would learn empathy. Some day you too will be challenged beyond your wildest capability and I pray for your sake you find the courage and determination that every food allergic parents wakes up with each morning.

  • Sarah

    I hope a similar principle will extend to those suffering from fructose malabsorption. I have this condition and I find it really annoying. We can’t eat wheat, rye, onions, apples.

    I came down with this allergy over a year and a half ago when I was 14. At the time, I was experiencing incredible measures of pain, a complete litany of symptoms after my 60% wheat cereal for breakfast.

    Also, does anyone else think a ‘pension’ should be available to the parents of young children who have allergies? Basically all of the gluten-free, egg-free, yeast-free, nut-free products are considerably more expensive than what other parents would pay for their allergy-free child. I know a lot of people can afford these changes, but there are young families starting out, getting a mortgage on their house and would be spending an extra $300 on food this year. plus medical treatment if you live in a country without good health care.

    Is this discrimination?

    Would you rather receive money from the government or have the products subsidized?

  • Sarah

    I hope a similar principle will extend to those suffering from fructose malabsorption. I have this condition and I find it really annoying. We can't eat wheat, rye, onions, apples.

    I came down with this allergy over a year and a half ago when I was 14. At the time, I was experiencing incredible measures of pain, a complete litany of symptoms after my 60% wheat cereal for breakfast.

    Also, does anyone else think a 'pension' should be available to the parents of young children who have allergies? Basically all of the gluten-free, egg-free, yeast-free, nut-free products are considerably more expensive than what other parents would pay for their allergy-free child. I know a lot of people can afford these changes, but there are young families starting out, getting a mortgage on their house and would be spending an extra $300 on food this year. plus medical treatment if you live in a country without good health care.

    Is this discrimination?

    Would you rather receive money from the government or have the products subsidized?

  • candice

    What tact you have. The sad thing is, it’s not just milk he’s allergic too.. every product with milk, even the slightest trace will make someone like that kid sick.

    I’m not a parent, I’m a 16 year old with fructose malabsorption and when I go out with friends I feel like some sort of freak who can’t eat the food they eat. socially this is extremely annoying, you have no idea how much it irks me that I have been afflicted with some sort of weird allergy.

    put yourself in the shoes of parents of allergic kids, and realise how much worrying they would go through if they sent their child to a bday party. Or to school, how can you tell a 5 year old that they’re not allowed to accept any sort of food from their best mates?

    And as for your absolute inconsiderate comment “Don’t give him any milk!” I challenge you to go a week without dairy. have fun with that

    If there is a method of improving someone’s overall well being especially a child’s, doctors and researchers might as well pursue, not just for the relief of individuals but for the continuation of medical and scientific research.

  • candice

    What tact you have. The sad thing is, it's not just milk he's allergic too.. every product with milk, even the slightest trace will make someone like that kid sick.

    I'm not a parent, I'm a 16 year old with fructose malabsorption and when I go out with friends I feel like some sort of freak who can't eat the food they eat. socially this is extremely annoying, you have no idea how much it irks me that I have been afflicted with some sort of weird allergy.

    put yourself in the shoes of parents of allergic kids, and realise how much worrying they would go through if they sent their child to a bday party. Or to school, how can you tell a 5 year old that they're not allowed to accept any sort of food from their best mates?

    And as for your absolute inconsiderate comment “Don't give him any milk!” I challenge you to go a week without dairy. have fun with that

    If there is a method of improving someone's overall well being especially a child's, doctors and researchers might as well pursue, not just for the relief of individuals but for the continuation of medical and scientific research.

  • Stacey

    I’m 29 years old and have had allergies to dairy, eggs and sulfites since I was 1 yr old. I am so proud of Brett for having the courage to go through with this trial. This is so exciting to me. I never thought that I would see the day where this would be possible. If there were trials for adults I would love to participate. I am willing to help others out there try and find ways to cope and start living normal lives without the fear. I do not live in an area where people are aware of food allergies or are concerned with them. Hopefully this will change soon. I’m trying to raise awareness one person at a time.

  • Stacey

    I'm 29 years old and have had allergies to dairy, eggs and sulfites since I was 1 yr old. I am so proud of Brett for having the courage to go through with this trial. This is so exciting to me. I never thought that I would see the day where this would be possible. If there were trials for adults I would love to participate. I am willing to help others out there try and find ways to cope and start living normal lives without the fear. I do not live in an area where people are aware of food allergies or are concerned with them. Hopefully this will change soon. I'm trying to raise awareness one person at a time.

  • Arielle Monaghan

    I really hope this study can be broadened to other food allergies. I didn’t grow into mine until my teenage years and am now 19 and am allergic to anything exposed to pollen (or basically anything that grows). This includes all nuts, all fruits, all vegetables, peanuts, and soy to name a few. I am a patient a Children’s Hospital Boston and they did try to desensitize me to pollen via allergy shots. This however only led to yet another encounter with anaphylactic shock. I have something called Oral Allergy Syndrome but I have a very severe version. My allergist at Children’s said that he has never seen anyone with as many severe allergies as I have. I go through many of the same things and now being in college and eating at a dining hall, food allergy awareness is now more important than ever. I am so happy for your family and wish you all the best of luck with food allergies.

  • Arielle Monaghan

    I really hope this study can be broadened to other food allergies. I didn't grow into mine until my teenage years and am now 19 and am allergic to anything exposed to pollen (or basically anything that grows). This includes all nuts, all fruits, all vegetables, peanuts, and soy to name a few. I am a patient a Children's Hospital Boston and they did try to desensitize me to pollen via allergy shots. This however only led to yet another encounter with anaphylactic shock. I have something called Oral Allergy Syndrome but I have a very severe version. My allergist at Children's said that he has never seen anyone with as many severe allergies as I have. I go through many of the same things and now being in college and eating at a dining hall, food allergy awareness is now more important than ever. I am so happy for your family and wish you all the best of luck with food allergies.

  • kerry

    I live in the Uk and have a 14 year old daughter with severe milk/egg and fish allergies. I cried whilst watching the videos I am so happy for your family. I would love to be on a milk desensitization programme as it is so hard watching your children have allergies and I find it hard to cope with as my daughter gets older now realising its not going to get better. Well done all of you and good luck for the future

  • kerry

    I live in the Uk and have a 14 year old daughter with severe milk/egg and fish allergies. I cried whilst watching the videos I am so happy for your family. I would love to be on a milk desensitization programme as it is so hard watching your children have allergies and I find it hard to cope with as my daughter gets older now realising its not going to get better. Well done all of you and good luck for the future

  • Grandma

    I wanted to ask Robyn if she would be kind enough to tell us how she fed Brett or ate herself when he was little with 15 food allergies. My 10 month old grand daughter was found to have 18-just about anything a person would eat. Her mom is breast feeding but feels since eczema started before she got solid foods it must be crossing over- so what to eat for mom and baby. she is not allergic to rice or sweet potatoes but is to most everything else. They live in a small town in West Virginia with limited medical resorces-any help you can give would be so appreciated

  • Anonymous

    Hi Grandma,
    I was lucky to work with a great nutritoinist at Children’s. I kept a bland diet chicken turkey rice beans and salads while nursing. It was worked for me. We made sure he had the right amount of variety of foods and nutrients. I bought a fry daddy and fried broccoli, tofu and my own foods to make sure he got the right amount of fat. We made rice and beans and tofu and gave them funny names so he would try them. We had hoo hoo sticks (stirfry tofu) that everyone loved. Today there are many gluten free mixes that can be made into muffins, cakes and more. We made soups from what ingredients he could eat. Have her get a good book with recipes and then fill in with the ingredients he can tolerate. Find a good nutritoinist who can make sure she is getting the right mix of foods. Good luck!

  • Aryn

    Wow you must be very ignorant when it comes to allergies. Do you have any clue how many things contain milk and don’t say milk? There are over 30 words that mean milk and don’t have any form of “milk” in them. I agree with Sarah that you should try going a week without anything containing milk and see how hard it is. My neice is highly allergic to anything dairy. If someone has touched anything dairy and comes into contact with her skin she gets hives. If she ingests we are headed to the hospital. FDA guidelines say it the container is supposed to be clearly labelled if it contains milk, but a lot of times it doesn’t. Gerber’s food doesn’t have such labels and since their ingredient list written in such a small font, my sister swore off Gerber altogether. You can also have your allergic child eating one type of a specific food and switch brands and the new brand happens to contain a dairy product. Oh and make no mistake Non-Dairy does not mean it does not contain a dairy derivitive. I applaud Robyn and Brett for doing the trial study and actually overcoming the allergy. That’s amazing…Congratulations.

  • Aryn

    Hi Grandma,
    Allergen food definitely can cross over. My neice had bad eczema while breastfeeding, we didn’t know that my sister’s food intake was what was causing it. When we found out she was so highly allergic to dairy my sister cut it out of her diet and the eczema subsided. Your daughter definitely needs to find foods that she can eat that your granddaughter isn’t allergic to. It may be harder for her to find a “Whole Foods” type store in her area, but if she can make the trip to the closest one she might find some things she can order and get at home and not have to travel. A nutritionist is definitely a good option and actually going and meeting one is best, but even a consult via phone or email might help her with food ideas. Also when your granddaughter is trying food, remember that it may not be something that a non-allergic person would eat if given a choice, when it comes to babies/kids they don’t know the difference between foods like mozzerella cheese vs. soy cheese substitute because they’ve never had them so keep a smiley face and let them decide whether something is good. Best Wishes and Good Luck to them.

  • Aryn

    Robyn,
    I was just curious, has Nicholas able to try the study?

  • http://www.foodallergyplans.com Robyn

    We had to choose which child to put in the study. At teh time the study begoan they did not want siblings. We will wait until he is older and understand the benefits of the study. He is 5 1/2 and claims, “I don’t want any shots like Brett.”

    On a separate note, Brett is doing great! He loves eating pizza and ice cream and has gained 14 pounds since the start of the study more than a year ago.

  • mpaxton

    You know, sadly, you here so much about the “anaphylactic” food allergies, but not that much about “delayed” food allergies…My son was 5 years old when he suddenly came down with the worst case of “tummy virus” (or so we thought) that I’d ever seen…of course I took away the “tummy akers”, milk, cheese, spicy, etc. just like my mom and grandma did for me when I was little and he would get better. Within a day or two of going back to eating “normally”, he was back in the bathroom…My son had 2 open heart surgies by the time he was 18 months old and had had his tonsils and adenoids removed and ear tubes placed at age 4, so needless to say, we’re very leary when he gets sick…a panel of blood tests revealed no “anaphylactic” (IgE) allergies, but a myriad of “delayed” (IgG) allergies – also called sensitivities…milk was at the top of the list…we’ve tried our best to keep him away from it…but every once in a while his grandma “forgets” and gives him corndogs – ya know, with butter”milk” breading…This past July 4th, we were faced with a 6 year old who refused to eat ANYTHING…He said he felt like he was being choked, like it was getting stuck, but was fine with drinks…Barium xray showed nothing, but thanks to the internet, I was able to guide me and his doctor in the right direction; a CBC revealed, high counts of eosinophils – a type of white blood cell that is the “allergy reactor”…without the biopsy we can’t yet be 100% sure, but we believe he has what is known as Eosinophilic Esophagitis, or “allergic esophagitis…The perils of a food allergy child never really end…sometimes they just subside (sometimes for 70 or 80 years…a human lifetime)…sometimes, they get worse…

    a note to “Grandma” I understand completely about small town WV and limited Medical resources…food resources sucks too!!!

    And to Sarah…Right on girl friend…I’ve been wishing for years that they would have help for families like ours…Every day families, with special FOOD needs kids…but unless you’re below the poverty level…you’re screwed!!!

    God Bless to the Nasuti’s…I will keep you all in my prayers….

  • http://www.facebook.com/robyn.nasuti Robyn Nasuti

    Hello friends,
    I’ve received some inquiries so I thought I’d give you an update. I am happy to report that a year later, Brett is doing great. He is still eating dairy products everyday to keep his tolerance from slipping. But funny enough he doesn’t like the taste of cow’s milk so he gets his dairy from other sources like cheese & ice cream. We got the go ahead from his Doctor in August to begin desensitizing to egg (in baked products.) He is doing great although still gaining weight. He’s gained about 15 pounds since the study began 16 months ago. He is doing great with the egg products and if it is successful he will only have a peanut allergy left. How far we’ve come in 12 years.Thank you to all the wonderful staff at Children’s for granting us our wish. We look forward to
    hearing more success stories in the future.

  • Rowtie Singh

    what were ur symptoms did t include mouth ulcers

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