A cure for milk allergies? Mom Robyn Nasuti shares her experience.

by Erin Graham on September 3, 2009

Brett_oneyearMy name is Robyn Nasuti and I’m the mother of three children: Brett, 11, (who’s featured in this series and pictured here), Taylor Marie, 10, and Nicholas, 5. Brett is allergic to dairy, peanuts and eggs. Taylor has no food allergies and Nicholas is allergic to peanuts, dairy, eggs, lamb, chicken, turkey, sesame, almond, wheat, oat, spelt, banana, pea and walnut. He just outgrew his soy allergy last month.

My husband, Alan, and I found out about Brett’s allergies when he was 1. I started keeping a journal because every time I went to the doctor, they’d ask me questions about his skin, asthma and  reactions, and I couldn’t keep it straight in my head. By writing down my thoughts, I was able to find peace — and also helped doctor’s determine how to best deal with Brett’s allergies.

Here’s an excerpt from my journal.

The day my son was born was both remarkable and heartbreaking for my husband and me. All through my pregnancy, I avoided caffeine, was diligent about what I ate and did whatever I could to ensure my growing baby a healthy beginning. When my son was finally born during an emergency Caesarian section, immediately I knew something was wrong. Finally they brought him to me and  explained that he had a cleft palate. A hole in his mouth? An incomplete palate (cleft palate) is a hole in the roof of his mouth (the tiny little bones apparently didn’t fuse during gestation.) As a result, feeding was to be a challenge.

Determined to give my child the benefits of breast milk, I decided to pump and feed him through a special nurser. I pumped after each feeding and continued for six weeks until I was ready to return to work. I watched my diet, forced myself to drink milk and protein and started each morning with a peanut butter English muffin. They told me breast milk was best. What they didn’t tell me was that with all the allergies in my family there were some foods that were best avoided during lactation.

The first time I tried to squeeze three ounces of a milk-based formula into his mouth, he cried uncontrollably. He writhed with pain arched his back, pushed his tongue out and spit the milk out of his mouth. It drooled down his face and neck. The next day I tried again. I was convinced he just needed to get used to the new taste. After all, it wasn’t the same as the watery breast milk. After the second helping of the formula, he began to break out in a rash, which slowly moved down the trunk of his body covering all the crevices of his tiny body. His skin had taken on a purplish tint and he was quite uncomfortable. I quickly dialed the pediatrician’s phone number, and the calm
receptionist on the other end of the phone said he was most likely reacting to the formula. ”

I drove to the doctor’s office with a pit in my stomach. I didn’t understand what was happening. The doctor
took a look at his swollen little body and said he was having an allergic reaction to the milk and suggested we switch to soy. I promptly went to the grocery store and bought the soy-based formula and filled the bottles in the refrigerator. Two days later, it was like deja vu. Another phone call to the doctor and another trip to see them, only for them to explain that it was nearly impossible for a baby to be allergic to both milk and soy  formula. I was told to continue with the soy formula and to try another brand.

We endured, and as the days went on, Brett’s rash faded  slightly, but his hands and head began to crust over with eczema patches. Eventually, I was referred to a local dermatologist. We spent the next three months in and out of
the dermatologist’s office. We bathed him in tar baths twice a day, smothered him in ointments, vaseline and administered oral antihistamines. All the while, we tryied to make sure he was eating properly (the incomplete palate made this difficult).

The cleft palate specialist told us to get him off the bottle as soon as possible and  not to go further than “stage two” baby foods. We began feeding him rice cereal and, later, oatmeal when he was 3 months old. We introduced baby foods early for nutrition. (Note: Commercial baby foods contain milk and eggs and beef products all of which we never hesitated to feed this innocent child.) Then, at my husband, Alan’s, 30th birthday party in October, we gave Brett a sample of the cake, just a bite, and two hours later we ended up in the emergency room. Again, we were told “just a bad case of eczema.” He was swollen, purple and covered in a rash from head to toe. His little hands looked like red puffy mittens that someone slipped over the once beautiful fingers.

The daily tar baths and vaseline didn’t help. He itched his head until he bled, and every night  woke crying and in pain. We believed what the doctors told us: “He has severe atopic dermatitis.” My family history included severe cases of eczema, so we resigned ourselves to the fact that he would be a “rashy” child.

When Brett was 10 months old, we made the trip to Children’s Hospital Boston for the palate repair. We struggled through seven painful, sleepless nights because we couldn’t give him any antihistamines before the surgery and finally we made it to the day of the operation. It was then that I was enlightened by a nurse. She noticed the condition of Brett’s skin, and as I read his history of allergic reactions to milk and soy formula and penicillin, she asked if he had been tested for food allergies. She said he showed multi-systemic reactions. I had never even considered it. What did she mean? Who should I call? What could he be allergic to?  She gave me the
name of a doctor at the hospital told me to call after he healed from the surgery. The surgery was grueling and incredibly stressful, but was successful.

To complicate things, I just learned I was pregnant. They told us that in a few months it would all be over and we could go on with life as usual. Little did we know… To this point, our lives had been consumed with learning about cleft palate worrying about whether our next child would also develop the genetic disorder or whether she would be spared.

After the surgery, Brett was put on a clear liquid diet for four days and immediately, his skin began to clear up. I was shocked. Could he really be allergic to the formula we had been feeding him all these months? I reached
for the phone and dialed the allergy clinic and made an appointment for Brett to be seen by an allergist.

Brett’s first birthday was approaching. On the morning of his birthday, I dialed the allergist’s office and asked the nurse if his results were back. She said she’d call me back. I went into a meeting, and during a break checked my voicemail. As I listened to the message I began to sob uncontrollably. A nervous woman on my voicemail explained “Brett has tested positive for wheat soy, dairy, egg, peanut, almonds, cashews, walnuts… oh God …you’d better get him in here he needs an Epipen… barley, oat, corn, lamb beef, penicillin, dust dog, mildew, mold, cat, dog.”  It was my son’s first birthday and I was devastated to learn I had been feeding my baby foods that were harming him all along. I cried for two long hours in my friend’s office. When I caught my breath, I began the journey home to celebrate Brett’s 1st birthday. It was dismal. It quickly turned from a celebration into a discussion group and there was a lot of crying….we didn’t share the cake with Brett this time for fear of what it might do to him.

Here I thought we had cleared the most difficult hurdle of my life -I thought we were home free. I thought I’d be able to handle anything after the challenges we had just endured. The first ten months of Brett’s life were spent learning, researching and understanding cleft palate. Now we begin a journey into a life with food allergies.

As the days went on, we started eliminating the foods he tested positive to and slowly his skin began to improve and his demeanor changed. He no longer cried at night and itched until he bled. I remember holding his hands
against his body and rocking him and whispering “happy thoughts” into his ear to calm his angry cries. All the time secretly wondering what was I doing wrong.

The next few months, we were in what I call “early denial.” Alan and I still ate peanut butter, but we just didn’t give any to Brett. We read labels and spent hundreds of hours between us reading and educating ourselves about food allergies, constantly searching the Internet and buying books and pouring over the information. It would become an obsession. Each new day would bring new facts and bits of information into our lives that would improve the quality of Brett’s life and complicate ours.

Within a few days, minor changes began to occur. The “fine” red rash, that covered his little body and hid the baby smooth skin, soon began to fade. Slowly, Alan and I were starting to realize this wasn’t just an allergy. It is a major lifestyle adjustment.  I spent months traveling to new doctors but never satisfied with what they had to say. One allergist told me, “He has to eat — are you going to feed him and let him itch or let him starve?” Suffice to say that six allergists later, and one who even urged me to give my son a teaspoon of peanut butter, we made our way to an allergy support group and eventually learned Children’s Hospital Boston was the best place for “multiples.”

We waited  to see Dr. Lynda Schneider, who soon became one of the most important people in my son’s life. In the past, when I told doctors that my son’s diet lacked chromium, selenium and calcium and listed the 16 foods he was allergic to, they drew blank stares. I finally found a great nutritionist at Children’s who was able to run his three- day diet through her system to determine what vitamins and minerals we might be missing and I added those into his diet.

Since Brett was diagnosed with life threatening food allergies, my husband and I glance at each other every time someone says, “Make a wish,” — you know, the whole birthday/shooting star thing. Because we know what we are wishing for. And now that wish just may have come true!

13 comments

  • sue

    Dear Robyn,

    Though we never dealt with the cleft palate challenges you faced, I felt the rest of your story like a kick in the stomach. We had so many of the same challenges with our ds (allergic to diary, eggs, peanuts, nuts). I still feel awful thinking of the “poison” I fed him before I learned enough to eliminate allergens from his diet. And I’ll always remember our ped’s voice (I was at work, too) when she gave me the results – after saying that she was only agreeing to the test so I would stop worrying that he had allergies!!

    Getting to the end of your story and hearing the hope in your words – that is the same way so many of us feel. And my “wish upon a star” every night is …. you know.

    Hoping against hope for you and Brett (and all of us),
    Sue

  • Peter B.

    Wow. That was truly profound and moving. I am going to share this with a mom I know who has a toddler and was told something similar about feed him.

  • http://Thrive Bob Gaynor, grandfather

    Having watched Brett, Robyn & Alan live this story.
    I am so Excited for All Allergic Children & their Parents to have the possibility of a Life Without Fear!
    I remember the day I called Robyn, she was crying, I said whats’ wrong? She said I am sitting here trying to figure whats going try & harm my son today!
    I couldn’t be Prouder of Brett & what he has done for All Allergic Children, enduring the Pain he has gone thru.
    HOPE & PRAY for SUCCESS!~

  • Robyn Nasuti

    Tears in my eyes. Thank you all for your good wishes. I’ve received sooo many emails and phone calls over the last few weeks. This experience has been amazing!

    We are very excited, but still very very nervous about next Thursday. A day I never thought would come is finally here.

    Please keep Brett in your prayers.
    all our best,
    Robyn, Alan, Brett, Taylor & Nicholas.

  • Another Allergy Mum

    With the exception of the cleft palate, you could have been telling the story of my son & our multi-allergy journey. I wish your son the best of luck & hope that someday my son may also be able to join in a similar study.

    Dee

  • Susie McCurley

    Hi Robyn,
    My 7 year old son is also in the the same study as your son. He’s had only one xolair injection and so far so good. I too am a mom of 2 boys with fatal food allergies and live your same life! My little guy is being so brave and is very motivated to be in this trial. He is our little hero! I would love for your son Brett to meet up with my son. I know our son has lot’s of questions. Please reach out. We are very hopeful for your son and counting on it working out for him.
    Peace and Health, Susie McCurley

  • Robyn Nasuti

    Susie,
    The numbing cream is great when left on for about 2 hours prior to the injection. Ask for a prescription and do it at home before you go to the hospital.

    Brett is in maintenance and drinking 2.5 ounces of milk every day now. We go back next Thursday for his final challenge. Fingers crossed!

    Are you in Boston or California?

    Brett has email and some other kids have emailed him. His email is slushynasuti@charter.net.

    Good Luck!

  • http://anntolpin3@comcast.net Ann

    Dear Robyn:

    Upon reading your post, I thought we were reading about our family, also a family with 3 kids. Our middle child, now age 9, has had food allergies from the get-go and we did all the same things you did, wondering why all the trips to the derm and the ointments, etc., were not effective. She has multiples and also has been a patient of dr. schneider for more than 8 years now. But walking into children’s was truly a breath of fresh air for us. She still has multiple allergies, but reading your story gives us hope that one day she may be able to eliminate some of these allergies. Given the fact that food is so social, these kids are troopers. It is not as terrible as what some families have to experience, but it is a difficulty that most don’t understand.

    Good luck to you all

  • Kathi

    Like others, I felt like I was reading our story…fortunately, our ped was more on the ball and sent us to an allergist the first time I tried a milk formula at 5 months. I, too, remember watching that rash creep down his body and thinking, “What the heck is *that*?” I’d had two other children and thought I’d seen everything, though I never could figure out why my third was so rashy and cried all day long. I also remember the awful guilt when I thought about all the ice cream and peanut butter I’d consumed during pregnancy and breastfeeding.

    My FA DS is almost four and recently had an anaphylactic reaction to milk (he accidentally ate a bite of his sister’s cereal while we were on vacation). It was frightening and depressing, as we had hoped he was outgrowing…his numbers have always been low, but our allergist reminds us that only ingestion tells the true story. I will be following Brett’s story very closely and cheering him on in his journey!

  • Susie McCurley

    Hi Robyn,
    I’m flipped to hear he can actually tolerate over 2 ounces! I told Liam and he is thrilled for Brett too. We are in Watertown, MA! I beleive Liam is the 2nd child here and all they keep telling us is “we have another child” who is at week ….. etc. And low and behold it’s Brett they are talking about. We have used the “numbing cream” and it does work well.
    I would really love Brett to meet Liam. Our son is extremely verbal about his food allergies for a 7 year old and quite a character. He to feels like he wants to do this to help other children (hopefully his own brother) with food allergies. That’s a lot for a child to take on because as you know they have to go through a lot and not all children could do it. We’ll email Brett soon.
    Peace and Health, Susie McCurley

  • sue

    2.5 ounces!!!! Congrats to you Brett. I hope/think I see a pizza party in your future.

    Has it been hard? Let us know when you feel like telling us. We are so proud of you and happy for you and your family.

    Sue

  • Donna LaRose

    I am so happy for your family. My son also has life threatening allergies to the top 7 out of 8 foods he outgrew wheat by the age of 2. He will be 10 tomorrow (o: I have prayed for some kind of cure and I am hoping this will be it. Good luck and thank you for doing this trial you will be helping so many people. God bless your family!!! Donna LaRose

  • Donna LaRose

    I am so happy for your son!!! My son has life threatening allergies to the top 7 out of the 8 he outgrew wheat at the age of 2. He will be 10 tomorrow and I have been praying for a cure since he was 5 months old and I am hoping this will be it. Thank you so much for having your child do his trial you are helping so many people. I pray it will all go well and he will be having an ice cream party for his next birthday (o: Snicerely, Donna LaRose

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