Treatment Stopped: No More Milk

I’m disappointed to report we’ve stopped administering what seemed like a promising treatment for our son’s milk allergy. No longer does he receive a small daily dose of cow’s milk mixed in his soy milk. Working with our allergist, we decided not to proceed with this new treatment. For me, the risk was too unknown, and the benefits weren’t guaranteed.

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The First Four Days

On the Saturday following my son’s food challenge, I mixed 10 mL (2 teaspoons) of cold cow’s milk into his morning glass of soy milk. The plan was to give a daily milk dose for one month’s time, and if all went well, increase the dosage by a certain amount, as recommended by our allergist. He drank it up without noticing any difference.

Not long after, we noticed red raised hives developing around his mouth. As the days progressed, we noticed the hives increasing—not enough to warrant an antihistamine, but more than what appeared after the same dosage of milk during the food challenge.

Each day the milk dosage became more and more stressful for me, even though I knew the little guy could tolerate a large quantity of milk. You can never predict the severity of an allergic reaction, which could be life threatening. Furthermore, the onset of such a reaction can be “deceivingly mild,” as outlined in our epinephrine instructions.


Not a Routine Treatment

On what would have been day 5 of his treatment, my son had cold symptoms—“le rhume” was making its way through our household. Our allergist advised us not to give him any milk when he’s sick, so we skipped the dosage. At about this same time, I started reviewing abstracts of various studies and checking in with others to find out about their experiences with this treatment. I had heard about oral immunotherapy before, particularly from all the discussion surrounding the recent New York Times article. Were we doing oral immunotheraphy?

After checking in with my son’s allergist, I learned we were instead using a practice referred to as specific oral tolerance induction (SOTI). Similar to oral immunotherapy, SOTI involves a patient consuming increasing doses of an allergen in order to build tolerance (I’m still learning about the similarities/differences between these various therapies, a comparison of which is a topic for another blog post…).

Our son’s allergist said SOTI is used quite frequently in Vevey, Lausanne and Geneva, with great caution used to determine the dosage amounts given at home in order to prevent a systemic reaction. As such, we felt comfortable going forward with the treatment. However, I started seeing things that raised more questions for me, like the current US guidelines for clinicians, published in 2010 by an agency under the National Institutes of Health.

“There is no evidence that unintentional or intentional exposures to the food allergen alter the natural history of the FA.” –Guidelines for the Diagnosis and Management of Food Allergy in the United States: Summary of the NIAID-sponsored Expert Panel Report, 2010 (p. 9, Sec. 3.7).

To find out more, I contacted a Geneva-based allergist via email that’s also familiar with SOTI. According to him, it’s not yet an established treatment, but it’s currently under investigation. I also spoke with our former allergist in the US. He does not administer SOTI in his practice and said it generally does not occur outside of a funded study. He also told me a recent study found a potential link between desensitization practices and eosinophilic esophagitis (it may have been this study). Finally, I reached out to some other food allergy parents via Facebook, one of whom shared information about a study I remembered from earlier this year, which indicates the success of oral immunotherapy may reverse over time.

Given our son’s reactions during the first four days of the SOTI treatment and what we’ve subsequently learned about this new treatment, along with emails back and forth with his allergist, we’ve stopped giving him milk.

Please note: I am not a medical professional. While this wasn’t the right treatment for my son at this time for a number of reasons, it may be in the future, as further research provides more data about its effectiveness. Also, our son’s allergist has been great and so very patient with me as I ask question after question…


Looking on the Bright Side

While I wish our son could have continued with this treatment, I was relieved to give up the stress and fear of his daily milk dose—even though it was low-risk with such a small amount. Plus, as I’ve written before, the food challenge gave us good news by showing that our son has a relatively high tolerance for milk. According to our allergist, this means he can now safely consume food products with the “may contain traces of milk” warning. For example, Oreo cookies in Switzerland fall under this category. More good news, right?

While it’s back to the status quo of living Dairy-Free Switzerland, hopefully in another year we’ll have some better news. I think we still have so much to be thankful for.

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4 thoughts on “Treatment Stopped: No More Milk

  1. hsw says:

    Perhaps his higher tolerance for milk is a sign that good things are on the horizon in the coming year for his continued safety with milk, kind of like how you mentioned traces of milk may be safe for him. It is hard to know what to do when there is promising news on the OIT front and then articles come out like the one this week that I saw on NPR (http://www.npr.org/blogs/thesalt/2013/07/01/197606669/experimental-treatment-for-milk-allergy-may-not-last). I really admire that you kept questioning and seeking information, the detective work for food allergy caregivers never seems to stop, does it? Hang in there!

    • dairyfreeswitzerland says:

      Thanks, Homa! Yes, we think his high tolerance is hopefully a good sign. So hard knowing what to do sometimes with all the research out there, often with conflicting results. I saw that NPR study recently too! Let’s hope there’s some more definitive information soon on OIT. As always, thanks for your support! -Heddi

  2. gratefulfoodie says:

    I agree with Homa, my son is almost 15 and is currently outgrowing his dairy allergy. The allergist explained that when when my son had “run ins” with dairy as a toddler and young boy, that was a good sign of out growing the allergy. Also, the day finally came and we food challenged with dairy baked in cake.

    This summer we are baking more and more with cow’s milk and I’m about to use butter later this week.

    Keep your fingers crossed for us!!

    I also heard the same information from my allergist that there aren’t enough long term studies showing the kind of success he is looking for. In addition, I heard one allergist speak about it and referred to one study with were three peanut allergic teens had success–but they were on a placebo!?!?

    Good things will come to you I am sure!

    • dairyfreeswitzerland says:

      Hi Caroline, Thanks for your thoughtful note! My fingers are crossed for your son. Great news about introducing baked milk and butter! Hope everything continues to go well and you get some more good news soon.

      Yes, I think overall we have to be pleased that our son’s tolerance for milk was so high. My wish is that someday soon he’ll outgrow all his allergies, and he’ll never even know he had them. If we could be so lucky…

      I’ve read studies too where children had small doses of milk and outgrew their allergies, but those that avoided also outgrew them (and avoided the risk). It’s so hard knowing what to do sometimes, but luckily we’re working with great allergists and have the support and advice of other parents of food-allergic kids like yourself.

      Wish you all the best, and hope you’re having a great summer. Look forward to keeping up with your son’s continued progress.

      -Heddi

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