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

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.

  • http://foodallergysupport.com Liz

    Will this study be opened up to other children? Is it possible for kids to “commute” in for the study? We’re in the Midwest and there’s just nothing going on out here for kids with milk allergy.

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

      Hi Liz,
      They are definitely looking for more patients for the study, but I think you might have to live locally. But I’ll check with Dr. Schneider and let you know.
      Thanks for your questions.
      Erin Graham

  • http://www.GoAllergyFree.com Mandy V

    Hi We live in NYC area. My 5 yr daughter is allergic to Peanuts, Soy, and Eggs. My 20 month old son is allergic to Peanuts, Soy and Dairy. Are there any studies in our area? If not, can we come to Childrens? I wish for great success in these trials and they will give the allergy community hope.

  • Taylor

    I’m so proud of my brother Brett.
    luv, taylor

  • http://breedingimperfection.blogspot.com Miryam

    Mandy,
    as much as I adore Children’s, you probably have more local options. Mt Sinai’s allergy clinic has ongoing trials, one of which is for dairy.

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

    Hi again Liz,

    Here’s a response from Lynda Schneider, MD, director of Children’s Allergy Program:

    The study involves multiple visits, so it is not possible to “commute” from the Midwest for this study, unfortunately. Our hope is that if this protocol is successful a larger trial will be done.

    Thanks a lot for your question,

    Erin

    • Arlene Garcia

      I am wondering how often you have to go in and do the treatments? I have a 4 year old daughter that has milk, egg, and nut allergies and would love to learn more about this study. I live in the Providence, RI area and would not mind commuting as long as it is not too many times per week. Also what are the age groups you are looking for?

      Thank you,

      Arlene

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

    Hi Mandy,

    Lynda Schneider, MD, director of Children’s Allergy Program, also responded to your comment:

    I wish for great success in these trials and they will give the allergy community hope. In NYC, there is an excellent food allergy center at Mt. Sinai under the direction of doctor Hugh Sampson and Scott Sicherer.

    Thanks a lot for your question and good luck!

    Erin

  • Jana

    Any thoughts (if this is successful) if the method will work for adults with life-threatening milk allergies or is this something that will only work for children still growing?

  • AJ

    I have two children who each has his own list of food allergies. Sometimes it seems easy/habitual, but, more often, it saddens us all and creates multiple difficulties in our lives. I recently realized why my children are not as independent as others– it is because I still need to be there to read labels and generally protect them. No, I can not give them money at the pool to go buy a snack; they do not know what is safe. They seem a bit more fearful than other children of their age which saddens me.
    The beginning of school or camp for me means WORK. I must explain and train everyone. I must fight disbelieving parents…all year long.
    Vacations are highly stressful since I must bring our own food from home, in a cooler, everywhere we go. I never want to go anywhere now.
    If I happen to forget an emergency kit (which I hate carrying along with my purse), I must drive all the way back home and be late for our appointment.
    Babysitters have turned me down for fear of having to use an epi-pen one day.
    We must spend $100 per epi set per child annually, plus pay for all the allergy visits. We must buy special/expensive food.

    I don’t know if human beings have added something to the environment to cause the rise in food allergies, or if something Darwinian is going on (survival of the fittest/genetic), but, all parents of food allergic children would probably give our right arms to alleviate this change in nature.

  • Beth Marcus

    I too am interested in the likelihood of this method working for adults. My 20 year old daughter is allergic to milk and we are interested in any research in which she can participate in the Chicago area. Hoping that you have success!

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

    Hello Jana and Beth,

    I checked with Lynda Schneider about whether she thinks this method might work for adults. She says that if this study is successful, then yes, she does think it should work for adults as well as for children.

    Erin

  • http://www.FoodAllergiesToGo.com Ann

    Children’s Hospital rocks! We’ve been dealing with anaphylactic allergies to milk, egg, peanut and tree nuts for 22 years. It’s a lot of work, but does gradually get easier as the child learns to take over some of the responsibility. It’s a big help that some restaurants have taken the step to serve patrons with food allergies. Check out our restaurant findings at http://www.FoodAllergiesToGo.com. Lots in Boston! I just want to share in the hope of making someone else’s life a bit easier. I’ve also documented school tips and items on our personal grocery shopping list. Kids with food allergies show that they are amazing as they mature and then go off to college!

  • Kim

    I hope to hear of a program in the Chicago area – I would drive just about anywhere to help my daughter overcome this allergy! It is amazingly difficult to deal with these types of allergies especially as the kids enter grade school. Other parents don’t understand – sometimes even school staff doesn’t seem to grasp the seriousness of the slightest contact with a food allergen. My daughter is in first grade and it is the first day she will be eating at school and I am at home (slightly terrified) thinking about how she will manage…3:00 can’t come soon enough! Good luck to all the parents out there with food-allergic kids…your job is harder than most!

  • sue

    I am also going to be watching this trial with great anticipation. Brett – you are a great kid and we all wish you the best of luck! Erin- I am on the West Coast in the Bay Area. Can you ask Dr. Schneider if she is aware of any trials out here? Like a previous poster said, I would do anything to ditch one of my son’s allergies. He is allergic to dairy, egg, peanuts and tree nuts. It breaks my heart to see the realization dawning in him that other kids get to have things that he cannot (he is 22 months old). I cannot imagine how this will impact him as he grows into it.

    FYI – neither dad nor mom had any allergies. And as to the the “too clean” theory (i.e., not exposed to enough bacteria), I am an awful housekeeper so that does not work for us. He was a c-cestion baby, though.

    Thanks for any info and we will be following Brett’s story eagerly!

    Regards, Sue

  • http://allergickid.blogspot.com/ Libby

    Thank you to Children’s Hospital for doing this research! Our son is allergic to peanut/shellfish/eggs/dairy/beef/lamb, and these trials give us hope for the future

  • Jessie and Ivy

    We are so proud of you, Brett! We are thinking of you and hope you are enjoying the rest of your summer! Cant wait to see you again! Your friends on CTSU!
    Jess and Ivy

  • Brett Nasuti

    Thank you so much for the good wishes Jessie and ivy and everybody. I’m excited about the final challeng which is September 18th. If all goes well I’m having a pizza party with non soy cheese pizza. Thank you everybody else to. Thank you Dr. Schneider and Dr. Umetsu who gave me this chance.
    brett Nasuti

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

    Hello Sue and Beth,

    I checked back with Dr. Schneider about other studies. She let me know that as part of this Children’s study, she’s working with a group led by Dr. Kari Nadeau, an immunologist at Stanford — their study is for children over age 4.

    Erin

  • Sue

    Mandy – Mt. Sinai has a baked milk study going on in NYC which my daughter is participating in. I believe they are still taking kids.

  • http://www.asthmaandallergies.org Robyn Nasuti

    To all those looking for updates on research you may want to check out your local Asthma & Allergy Foundation chapter. They have newsletters and materials with updates on research and support groups. AAFA New England has been a tremndous resource for our family. In New England the website is http://www.asthmaandallergies.org. If you’re outside New England the national website is http://www.AAFA.org.

  • Shannon Kaiser

    Hi Erin,

    My son is a patient of Dr. Schneiders and Karol Timmons in the Atopic Dermatitis Program. He is allergic to milk, eggs, peanuts and casein. I would love to see if we could participate in the program.

    Thank you,

    Shannon

  • Jennifer LeBovidge, PhD

    Hello, Kim. I am a psychologist at Children’s Hospital Boston, where I meet with children with food allergy and their families, to help them find ways to manage the practical challenges, as well as the anxiety and stress that can go along with food allergies. As you point out, the stress that often accompanies transitions like sending a child with food allergies to school can be quite significant, and you are not alone. You may already be aware of the following organizations which provide resources for managing food allergy (and information specifically related to managing allergies in the school setting), but I thought it couldn’t hurt to pass them on to you and any other readers: the Food Allergy and Anaphylaxis Network (www.foodallergy.org); Kids with Food Allergies (www.kidswithfoodallergies.org); the Food Allergy Initiative (www.faiusa.org); and the Asthma and Allergy Foundation of America (www.aafa.org).

    Of note, the Food Allergy Initiative’s website includes information on support groups across the country (including the Chicago)—this may be found under the resources and downloads section.

    Best,
    Dr. Jennifer LeBovidge

  • Cathy DeVinney

    Thank you for allowing others a chance to see what is happening in this study. We (our 23 mos son) live the allergic life–milk, peanut, tree nut– as well. Thank you, Brett, for sharing your life and for being brave! May you have great success and be ingesting milk in no time!

    Cathy

  • KELLI FURR

    My daughter is 4 and we discovered her allergies at 9 mos. She also has numerous allergies, milk is also one of her severe ones. Her allergies include-eggs, all nuts, soy, wheat, milk (casein), nickel and triple antibiotic ointment. She also has eczema so we have to wars on our hands. We live in Memphis and have yet to find a good dermatologist and someone that can do something similar to this story. I would definitley do this if it meant for her to be allergy free

  • Lisa

    I was so excited when I read about Brett and his dairy allergy. We also have a son with severe milk allergy that just headed off to college this past week. We would do just about anything to be in a study in the Midwest. Keep up the good work. It would be our dream to find a cure.

  • sue

    Erin – thank you for the information about the program at Stanford. At 22 months, my son is too young. but you can bet I’ll be contacting Dr. Kari Nadeau at Stanford and keeping in touch for the future!

    Brett – I’ll be dreaming of gooey cheesey pizza for you on September 18. Extra cheese please!!!

    Many thanks and best of luck again to Brett and you all. Fingers crossed for you,
    Sue

  • A mom

    Brett, thanks so much for sharing your experience with us, I’m keeping my fingers crossed for you.
    Cheers from San Francisco

  • Silvia Cardarelli

    Hello Kim:
    We live in Brighton (close-by) and my son is a patient of Dr. Twarog. He is 8 years old and severely allergic to dairy and tree nuts. He was diagnosed when he was about 10 months old. We have been struggling for years and are extremely interested in participating in the research study mentioned.
    Could you let me know how to proceed from this point? Please e-mail me and I will provide you with further contact information.
    Thanks so very much for all of your hard work!! Silvia Cardarelli

  • Cindy B

    My first son was sensitive from the minute he was born. We found out he was allergic to eggs, dairy, soy, wheat, oats, tree nuts and peanuts. I had to quit nursing him and he went on a hypoallergenic formula. His full body, oozy eczema cleared up about 90% from the switch. He is 10 today and only allergic to nuts and also has asthma.

    I was more ‘careful’ with my second pregnancy and stayed away from peanuts, had little dairy in my diet and little egg product. My second son was born just as the first but much worse – reacted above and beyond to peanut on the testing, eczema everywhere on his body – and reflux. Hypoallergenic formula did not help at all. He was then put on an amino acid – prescription formula through 18mths of age. This cost between $600-$800/mth – half of which our insurance covered. He is now 7 yrs old and only allergic to nuts with the occasional hive from buttermilk solids. He has wheezing here and there depending on animals in houses, environment, etc. but not on any current daily meds for it.

    I gave up with my third pregnancy and ate all the foods above except for peanuts and our third child was born with buttery skin – perfect! I knew from the minute I touched him that he would be ‘ok.’ He does not have any food allergies/eczema/asthma and is now 4 yrs old.

  • Cindy B

    I realize there has to be some genetic factor in my sons. My husband has seasonal allergies, asthma and has had reactions from some foods over the years. His mother (kid’s grandma) has asthma, seasonal allergies and has had some severe reactions to food as well.

    I also really believe that our bodies were not designed to be consuming the foods that we currently eat. Our foods have been altered so much over the years – cross-pollination, hybrid, etc…. our bodies don’t recognize these foods anymore.

    I’ve been told that kids with dairy allergies can consume ‘raw’ milk – right from the cow – with no side effects. Pasteurizing kills all of the good things in milk and then those good things are put back in other forms that are not natural. Any research on this?

  • http://www.meetup.com/NYC-K-FAP Felicita NYC

    Brett
    I am so proud of you. Listening to you and your mom speak was very inspirational. My son is 6 ½ years old and has multiple food allergies as well. Hearing how brave you and your mom are gives us refreshed strength plus amplified motivation.
    Mandy,
    Mt Sinai’s allergy center’s medical care/service has been outstanding for our son so far. We were offered to have our son participate in their baked milk study. We are still considering it but have not yet decided to participate. Maybe Mt Sinai is the hospital to check out for you living in NYC (or not)?
    AJ,
    Oh we hear you and face some of those same issues. Epi pens at 100 dollars and remember we need to have one for the sitter, go bag, school nurse…Lots of $$$. We were considering moving to Boston since it seemed to us that Boston is more “Food Allergy” prepared/aware with a lot more FA care and services available than NYC (from where we see it ). I’m still researching whether this assumption is true . We formed a playgroup here in NYC (http://www.meetup.com/NYC-K-FAP) to help keep kids with food allergies enjoying childhood while parents, schools and doctors continue to do the backend work with finding ways to keep them healthy and safe.
    Parenting children with food allergies (I agree with you) is not simple task.
    Thanks to all the Doctors including the ones at Mt Sinai and The Children’s Hospital Boston for all that they do to improve the health of children with food allergies.
    Be Well to all,
    Felicita

  • http://twitter.com/foodallergymom Leela Obilichetti

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

    My daughter, 3, has food allergies. She was diagnosed at about 9 months old when we went in for hives when she had yogurt. The first skin test showed she wasn’t allergic to yogurt but to a plethora of other things. I went on an elimination diet (her and me since we were nursing) and narrowed it down to the things she was allergic to. We narrowed it down to dairy, soy, eggs, nuts, peanuts, sesame. Later on we thought she was allergic to cantaloupe, kiwi and urad dhal and masoor dhals. We most recently tried urad dhal and she seems to be fine with it. We also tried baked eggs (with wheat, baked for longer than 10 minutes) and she seems to be able to tolerate that.

    Our life has profoundly changed by having a child with allergies. When she went to preschool last year it was absolutely the most nerve wracking thing I’ve ever done. Her teachers were fantastic and over time I was able to trust them fully.

    Having a child with such variety of allergies (oh and we are vegetarian) has opened our eyes to new foods that I would have never learned about previously. This also has set us off on a journey where I am learning more about food and where it comes from and how to take control of my daughter’s allergies and our eating. Unfortunately a lot of times the things that are most processed are the most ‘safe’ for allergic children.

    Thankfully we haven’t used the epi-pen thus far, but have ended up in the ER once and it wasn’t even ingestion. Twice we had huge scares and it was being proximity of the allergens. We don’t even know which. This is what causes me to live in fear that something really scarey might happen to my young 3 year old. She is not capable of making judgement calls herself yet. But it is amazing to see her tell people what she is allergic to. I was shocked when she turned down another 3 year olds attempt to offer her goldfish. Though we have talked about it I was happily surprised she did it on her own without prompting.

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

    My thoughts are that we eating more GMO foods. I don’t know anything else. I mean my daughter was born with these so they came from me and my husband, so where did those come from? Who knows? There certainly must be something genetic but neither family has any food allergies in their history. I got seasonal allergies later on in life.

    We are in the Boston area, I’d like to find out if there is anyway we could qualify for the treatment. Could you let me know? Thanks.

  • Peter B.

    Hi Brett and Robyn,

    Brett – I admire your courage. I have an 11-yr old son who is allergic to milk (all dairy) and eggs, and we live about 45 minutes outside of Boston. I am going to look into getting him into this study, and hopefully he can meet you. He is a pretty brave kid, but having severe reactions and understanding the consequences will be something for him to overcome.

    Robyn and/or the doctors — I hope you are open to speaking with us. My name is Peter and my wife’s name is Andrea. Please let me know.

    Sincerely,
    Peter

  • Robyn Nasuti

    Hi Peter,
    I would certainly be willing to speak with you. My email is foodallergy@charter.net.

    Feel free to email me & I’ll give you my phone info. We live out on 495 about 50 minutes outside of Boston and found it no problem to get in to the hospital when we needed to go in for treatments.

  • alice

    I hope to see positive breakthroughs in this milk allergy research. My two sons are 2.5 and 3.5, with multiple and severe food allergies. My oldest is 4.5 and he is anaphylactic to chicken, turkey, egg, peanuts — and those are confirmed from experience. His IgE levels are very high to wheat, rye, barley – so those are very likely ana reactions. He also has allergies to peas, milk, treenuts, fish/shellfish. i’m probably forgetting something. We have been seeing the docs at National Jewish Health — so we have accurate information and diagnosis. But it wasn’t always that way. It saddens me that he has so many food allergies, and severe reactions. But, we have to keep pluggin’ on, I suppose. My boys are very happy and otherwise healthy. Of course, they’ll have to learn to live without and deal with feelings children shouldn’t need to deal with. I suppose it’s character-building! I’m glad so many support groups exist and very happy to read about studies like these being done.

  • Rebecca

    I suffered from food allergies (dairy, eggs, chocolate, nuts, fish/shellfish) from the time I was weaned from my mother’s milk. I’m now 57 yo and have overcome (pretty much) all the allergies except to fish/seafood/shellfish, which cause anaphylactic response. I did start drinking milk, greatly diluted with water, when I was 5 and then only seldom — I guess in effect this was a desensitization. I now can use dairy, but when I have too much I get a flare-up in my eczema. Same for nuts and chocolate. Eggs seem to be okay. So, I can testify that desensitization does work. Good luck to all those parents who are struggling with this! And, if your child is allergic to dairy, make sure they get enough calcium from another naterual source such as broccoli etc.

  • Robyn Nasuti

    Dear Alice,
    I too was frightened about what life would be like for Brett growing up with food allergies. I was concerned about bullies and other kids “not getting it” so I enrolled him, at the age of 5, in an American Kempo Karate class. I’m proud to say that he just got his Black Belt last Saturday and has gained so much confidence and discipline from karate. I’ve been told that children with food allergies are more mature than their peers because they have more responsibility. I can say this is indeed true with Brett. I keep reminding Brett (11) & now Nicholas (5) not to let food allergies define who they become in life. They have the power to become whatever they want no matter what they can eat. Food is only a means to nourish the body. His character and personality are what will make him successful. I believe he is a stronger person becuase of the challenges he has faced. I am so proud of him!

  • Hema

    Hi Robyn,

    It is a very brave and courageous thing that you, Brett and your entire family are trying to do. Food allergies take a toll on everyone and I only hope that we are getting closer to a cure because avoidance is not always a suitable option as it affects the child’s mental and emotional state. I am hoping that Brett has had his pizza party and he is doing well.He really sounds like a great kid.
    I have two daughters who are allergic to beans and nuts and we are vegetarian so these allergies have dramatically reduced our protein options and has somewhat hindered my daughter’s growth. I have tried and still trying some herbal treatments and praying that they outgrow such a natural and necessary treasure of life.

    I too hope you and the doctors are open to communication
    My name is Hema and I am presently in Toronto. My daughters are my life and I would love for them to eat and live more freely.

    Thankyou and Regards .
    Hema

  • Darin

    Hi Brett and Robyn,

    My son has several severe food allergies including milk. We are looking for a good nutritionist in the Boston area to ensure he is getting all of the nutrients he needs. You mentioned in the video that you finally found one that was able to help. Would you be able to provide the name and number of the one that worked for you?

    Good luck with everything. I truly hope it works out for you.

    Sincerely,
    Darin

  • http://allergycommunicationplans.wordpress.com Robyn Nasuti

    We see Wendy Elverson at Children’s 617-355-6117. She is fantastic!

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  • http://www.entandallergy.com pediatric ENT

    Thanks Brett and you shared your experience. I am really amazed by the determination you are showing. I hope you’ll get well.

    -Luke

  • Adriane Walker

    My daughter has several allergies which include soy,milk,nuts,wheat and eggs.She is six years old now,and the journey has been scary at times.It can be very lonely sometime,because if you are not dealing with this type of medical condition you don’t know about it.Grandparents are scared to deal because the don’t want to cause the child harm,which is quite understandable.Their are days when I long to give her cake and ice cream,where I can just watch her eat and make a mess.But I just have to come back to reality and deal.For those just starting this journey it will become easier even if it does not seem so.I just hope that she may grow out of it one day,and if not just love her and be as mindful and careful as possible.Brett I wish you all the luck in the world…

  • Carolyn Haddigan

    Thank you for sharing your story, Brett. My 3 1/2 year old son has a severe milk allergy, which only seems to be getting worse. Your story gives me so much hope. I am truly happy that you are able to enjoy milk and not have to live with the fear of ingesting it by mistake. I would love to learn more about participating in this study.

  • http://internetexployer sabrina benson

    THANK YOU FOR SHARING YOUR STORY,BRETT. I AM SO HAPPY FOR YOU ! THAT IS SO WONDERFUL YOU CAN DRINK MILK NOW. I HAVE A LIL BOY WHO IS ALLERGIC TO MILK & PEANUTS & I KNOW HOW HARD IT CAN BE.I WISH YOU THE BEST&YOUR FAMILY.YOU ARE A BRAVE BOY!

  • http://www.totsites.com/tot/babyzook Mandy Zook

    What a wonderful story. My 5 year old son has a level 5 allergy to milk and this gives me hope. Is there any way for him to be in a study? I beg you to please, please, please find a way to include him.

  • Prachi Solomon

    Brett,

    You have led a path a direction and a spirit of hope for the many others who are looking for a cure. I have a little boy – Dhruv, who is also very allergic to milk. Till last year, he could not not even touch dairy items.
    He is just as careful as you would have been till recently. He also wishes his allergy to go. Now that he knows about you, he is more positive,

    Cheers

    I am from Mumbai India, Is there anything happening on this front in mumbai?

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

    Hello,

    I’m sorry – I checked with Dr. Schneider and she doesn’t know of any studies near you.

    Erin

  • http://www.entandallergy.com/services/allergy.html Allergy doctor

    I hope Brett’s severe allergies will be gone forever. He is such an inspiration to others too.

    -Sam

  • 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!

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  • 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 !

  • 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.

  • 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.

  • 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

  • Aryn

    Robyn,

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

    • 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

  • 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….

    • donna

      I feel your pain, I live in Kentucky, there isnot a doctor in this state who can even see my 11 yr old son, he is alergic to wheat and chicken, they (holsten valley, Tn) has now took soy, milk, eggs, nuts and fish from his diet because his last biopsy was worse than his first one, it is a nightmare, his speacialist is against homebound, due to social skills (what ever) his pediatriction here signed the papers for homebound, now he is suposed to be in school, but he is sick ALL the time, I get so frustrated, and feel no one can come together on this ( meaning different doctors and the board of education) Aaron is distinguished in all his classes he finished last yr with top final average, straight A’s……….and this was after missing a whopping 36 days of school to aler.donna

  • 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.

  • Mzook

    My son has been “cured” of his milk allergy… See the article in our Iowa paper….

    http://www.desmoinesregister.com/article/20110227/LIFE/102270301/34-weeks-milk-miracle

    • chirag goswami

      hi,
      when i clicked on the link it said the page couldn’t be found 
      you must be wondering why do i care .
      my answer is that i am a teen that is allergic to milk and as i get older my reaction becomes worse if you kid is cured from milk allergy can you email the link 

      my email address is chiraggoswami5@gmail.com 

  • Chiraggoswami5

    hi i am also allergic to milk protein so i know thats it is challenge , i was wondering if anyone has found a cure to milk protein ,  

  • Kigozikawesa

    My daughter of five years reacts to milk, eggs and several other protein foods. She is too small for her age and appears malnourished. I’m worried her growth is greatly affected. If there is any remedy or a feeding formula that can cure this abnormality, I’ll be grateful.  kigozikawesa@yahoo.com

  • Weihekkkk

    my 3 year old has been allergic to milk protein since she was just over a year.  she had obsessively gotten into small amounts of milk protein on a regular basis.  She has gone from days of diarrhea after consumption to barely a stomach ache after consuming cheese.  There is something to these studies.

  • http://www.prlog.org/11289974-phone-number-lookup-verizon-phone-number-reverse-lookup-to-get-information-you-need-quickly.html phone number lookup

    I’m not sure if I believe it. 

  • http://www.facebook.com/laurenmarieowen Lauren Marie Owen

    Is there a way you can do this on your own if your allergy is not life threatening? I get a few hives and severe stomach aches when I eat dairy. This started 5 years ago. I tried to condition myself against dairy by just eating a little bit every day, and taking benedryl, but it didn’t work. Is there some sort of regularity or dosage? And how do I digest it better? The pills for dairy digestion seemed to make me break out as well. I also may have celiac’s, and definately a gluten intolerance. I just read that Stanford has discovered a bacteria that may help celiacs eat gluten! Wanted to share. http://www.sciencedaily.com/releases/2002/09/020927070151.htm

    • clairemccarthymd

      It’s always best to do these things in partnership with your doctor. Allergies are tricky things, and can be dangerous.

  • 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 !

  • 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?

  • 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.

  • 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.

  • 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

    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.

  • 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.

  • Rowtie Singh

    what were ur symptoms did t include mouth ulcers

  • Michael

    susan shepard clinic in australia helped my wife with the same thing.  Best $350 we ever spent.  They did it all online and now she can eat all kinds of foods.  

  • Msaeed

    My 5 years old son has exactly the same allergies as Brett, I have been searching for a cure for some time now, do you know if there is a similar research in Toronto, Canada

    My son was just watching Brett’s video (drinking milk and having Pizza) I’m sure you can imaging how he felt……