This decision aid is designed to assist people with IgE-mediated cow’s milk allergy and their families and caregivers to decide whether to undergo oral immunotherapy for cow’s milk allergy
What should you know?
What is an IgE-mediated cow’s milk allergy?
IgE-mediated cow's milk allergy is an inappropriate response of your immune system against otherwise harmless proteins in cow’s milk (most common are casein, alpha- and beta-lactoglobulin – those that cause milk to appear white).
CMA is the most common food allergy in young children (about 1 in 50 children younger than 4 years) but it varies around the world. It is also the third most common food allergy after peanuts and tree nuts in general. CMA is typically outgrown without any treatment: about half of children outgrow their CMA in the 1st year of life, and about 80% outgrow it by age 3 to 4 years.
Symptoms of CMA usually occur immediately – within minutes up to an hour – after ingestion of milk, dairy, and other products containing cow’s milk. Most common symptoms are hives (urticaria) and swelling (angioedema) of the skin, lips, tongue, or throat. Symptoms may also include runny or congested nose, asthma attack and wheezing, vomiting, diarrhea, and low blood pressure that may cause fainting. Anaphylaxis is a severe allergic reaction because it involves multiple organ systems and may result in death.
The mainstay of therapy is the total avoidance of the offending food. This regimen is unfortunately associated with a great risk of accidental exposure, due to the ubiquitous presence of milk-derived allergens, depending on the age of the patient and the severity of symptoms. These factors ultimately lead to a marked reduction in quality of life.
Treatment you are deciding about
Oral immunotherapy (OIT) is first initiated by administering offending food doses below the threshold that triggers a reaction in allergic individuals. The second of three stages of treatment (build-up phase) is focused on gradually increasing the amount of ingested allergen over a several months time period. Once a maintenance dose of the allergen is achieved, the patient has to ingest it for a certain interval of time (typically ≥1 year, possibly indefinitely) to maintain a protected, desensitized state. Patients might be asked to resume avoidance therapy after ending OIT, to be subsequently tested for Sustained Unresponsiveness to the allergen and evaluate how long-lasting the protection is from OIT.
Problem with treatment
Oral Immunotherapy is an experimental therapeutic approach that might improve the life of allergic patients, inducing a temporary or complete tolerance to milk. Yet, there are risks associated with this medical procedure:
OIT is associated with the risk to develop allergic symptoms of varying degrees of severity. These side effects occur mostly during the build-up phase of the therapy, even though there might be episodes in a significant number of patients on maintenance dose if the food is not ingested regularly. This means that despite providing a benefit, the therapy itself might be the cause of allergic reactions, leading the patient to feel treatment-related anxiety and distress.
There is a risk of overtreatment (a situation in which the cow milk allergy would have been outgrown with age, yet the patient had been receiving OIT with the related risks). This means that you would ultimately achieve oral tolerance, but you may have suffered unnecessary anxiety, distress and risks related to the therapy.
Oral Immunotherapy has demonstrated to achieve desensitization in a considerable amount of individuals while conferring Sustained Unresponsiveness (SU) only in a minority of treated patients. This means that most patients undergoing OIT develop a temporary state of tolerance against the offending food, that requires strict adherence to the allergen exposure regimen to be effective. Achieving this can be challenging, because certain factors like common infections, menstruation, exercise, or being tired can lead to reacting to a previously tolerated OIT dose.
Topics that you should discuss with your doctor
If you have not done so yet, it will be important to speak with your doctor about the following issues:
- confirm that you do have IgE-mediated CMA, because OIT is effective only for this type of CMA
- discuss the frequency and severity of your previous reactions, because it may be important to determine how safe OIT may be for you
- discuss any other conditions you have, such as asthma, to help determine how safe OIT may be for you
- discuss the schedule of OIT, to decide if the protocol and restrictions fit with you and your family’s lifestyle
- discuss the availability of epinephrine and your ability to administer it when needed
- discuss what healthcare support will be available for you and your family when needed.
- discuss what alternatives are available should neither milk OIT nor strict milk avoidance be viable options for you
Explanation of outcomes used in process:
Anaphylaxis
Need to use epinephrine injection
Assess your values
To calculate an individual recommendation and to help understand how good or bad a health state is we have created the scales below with "dead" marked as 0 and "good health" marked as 100. We would like you to indicate on these scales how good or bad each health state is in your opinion:
In my opinion my current health state is equivalent to:
0
Dead
50
100
Good Health
50
In my opinion having an anaphylaxis is equivalent to:
0
Dead
50
100
Good Health
50
In my opinion having to receive an epinephrine injection is equivalent to:
0
Dead
50
100
Good Health
50
In my opinion having an adverse effect for which OIT would be stopped is equivalent to:
0
Dead
50
100
Good Health
50
In my opinion having severe nausea, vomiting, stomach pain, or diarrhea is equivalent to:
0
Dead
50
100
Good Health
50
In my opinion having severe difficulty breathing or wheezing is equivalent to:
0
Dead
50
100
Good Health
50
In my opinion having a widespread redness of the skin or hives is equivalent to:
0
Dead
50
100
Good Health
50
In my opinion not being able to drink cow's milk and eat dairy is equivalent to:
0
Dead
50
100
Good Health
50
In my opinion having to strictly avoid milk and milk products and not being able to accidentally consume even a small amount of cow's mil is equivalent to:
0
Dead
50
100
Good Health
50
In my opinion having to go to emergency department is equivalent to:
0
Dead
50
100
Good Health
50
In my opinion being admitted to hospital is equivalent to:
0
Dead
50
100
Good Health
50
In my opinion having itchy lips or mouth, or rash around mouth is equivalent to:
0
Dead
50
100
Good Health
50