Milk Allergy Desensitisation

Milk allergy is common, affecting 1-2% of UK children and can cause severe allergic reactions. Every year, around 40% of milk allergic children have accidental exposures to milk. Whilst rare, milk is the most common cause of severe and fatal allergic reactions in younger children. Milk allergy is often outgrown during early childhood, but in some children can persist in later teenage years or even early adulthood. Until recently, the standard treatment has been careful avoidance. This is starting to change and there has now been a 15-year history of medical research into desensitisation to milk.

What is Oral Desensitisation?

Oral Desensitisation (OD), also known as Oral Tolerance Induction (OTI or OIT) or food desensitisation, is a treatment that involves giving very small, but gradually increasing amount of the food that the child is allergic to. The intention of OIT is to increase the tolerance to milk so that larger amounts of milk can be taken without causing any symptoms and as a result, milk containing foods can be eaten safely or at very least, accidental exposures to small amounts of milk will not cause reactions. This treatment has been most studied for milk and egg and is also the subject of intensive research for peanut allergy. It is important to recognise that this treatment leads to a state of desensitisation (a temporary state, where greater amounts of milk can be tolerated without symptoms) and not necessarily true ‘tolerance’ (a permanent state where any amount of milk can be consumed without any risk of reaction). In practice, this means that the regular doses of milk must be continued regularly in the long term for the treatment effect to remain. If it isn’t, the risk of reaction returns.

How effective is oral desensitisation?

There are numerous studies from around the world as well as systematic reviews (where the results of lots of studies are combined) that demonstrate that OIT works well for milk and egg. Different studies use different approaches, in different children but report up to 100% effectiveness. Children tend to have 3 possible responses to treatment – 1) they achieve a full, high dose that they can tolerate without any problem, 2) They can’t reach the full dose without persistent side effects but can still tolerate a useful amount of milk without reactions, 3) they are unable to progress at all due to side effects.

Depending on the clinical situation (which will be discussed with you) there are 2 different methods we use for milk desensitisation.

• For patients who are more sensitive or have a higher risk of severe reactions, we use a protocol developed at Mt Sinai Hospital in New York that is based on baked milk, in the form of a muffin. Your child is given a small amount of the muffin under medical supervision and if this is tolerated, the dose is repeated daily at home for 2-4 weeks. The child then returns to be given a higher dose under medical supervision.

• For patients who can already tolerate baked milk or who are considered at lower risk, we use plain milk albeit diluted in water for the earlier doses. Your child is given a small amount of milk under medical supervision and if this is tolerated, the dose is repeated daily at home for 2-4 weeks. The child then returns to be given a higher dose under medical supervision. The aim is to achieve a top dose of around 250ml of milk. Even if this is not achieved, if regular tolerance of a smaller amount of milk can still be reached, this will still reduce the risk of reactions due to accidental exposures.

Studies are starting to show that children with very high skin prick or blood allergy tests to milk are less likely to find the treatment to be effective and more likely to have side effects – this will be considered at any assessment. Multiple studies have also shown a clear improvement in quality of life for both children and parents, where OIT has been performed.

As part of any assessment process, we will discuss which type of OIT may be more appropriate (baked versus plain milk) and where it should be done. For lower risk patients, this can be done in our clinic facilities but for those where the risk is higher, due to a history of severe reactions or sensitivity to very small amounts of milk, our day-case facility at Great Ormond Street Hospital, through our sister practice, The Food Allergy Immunotherapy Centre, may be more appropriate. If this is required, it will have a cost implication.

How safe is oral desensitisation?

There has been a lot of concern around safety of this treatment, because of the known risk of severe allergic reactions that could happen to foods. Most, if not all children, will have some allergic reactions during the treatment but these are virtually all mild. Typical reactions are rashes, lip/face swelling, wheeze and abdominal discomfort. Severe reactions, requiring adrenaline are reported in a small number of patients in the published studies but with this treatment now widespread in Europe and the US, it is very reassuring that there have been no reported fatal or near fatal reactions reported. In December 2021, a 9-year-old girl in Canada was reported to have died after exposure to baked milk that she was consuming on the advice of her allergist. Whilst details are not completely clear, this was not part of a desensitisation programme and the Canadian Society for Allergy & Clinical Immunology subsequently made a statement emphasising the need for any such recommended deliberate allergen exposure to be done as part of a properly supervised programme. They also drew attention to the fact that there are a number of ways that the risk of severe reactions can be reduced and many useful lessons have been learned from severe reactions that have occurred. The most important influence on safety is the actual desensitisation protocol. Some studies are focussed on a rapid dose increase, with multiple hospital visits. This can mean the treatment works much more quickly but carries a greater risk of severe reactions. Our approach is to prioritise safety first although it is impossible to desensitise without any risk of allergic reaction. The risk of reactions can be mitigated by ensuring that parents are fully able to manage allergic reactions when they happen (all patients are prescribed and trained to use Epipens), and observing some simple rules around dosing.  The risk of reacting must also be considered in the context of the risk of severe reactions that may happen if the child were not desensitised and had an accidental exposure, in an unmanaged setting.

There is also a concern that OIT can result in the development of eosinophilic oesophagitis (EoE – an inflammatory condition of the oesophagus) and other food-induced gut related problems. A systematic review reported EoE in up to 2.7% of patients undergoing OIT for IgE mediated food allergy (although the review is based on incomplete datasets, because most trials of OIT have not reported the presence or absence of EoE as a longer-term adverse event) although as EoE is known to disproportionately affect children with allergies anyway, there is no evidence as yet of a causative link.

Currently, international guidelines on the management of food allergy state that OIT to milk, egg and peanut can be offered by allergy specialists, reflecting our improved understanding and the experience of the many doctors in Europe now offering this.

What does oral desensitisation treatment actually involve?

The process can be broken down into a series of parts:

• Assessment – following a confirmed diagnosis, an assessment is required to introduce the concept of desensitisation, consider if it is suitable for your child and whether it is something you would like to consider. This is a process of shared decision making, that includes provision of information such as this document as well as a conversation about risks, benefits, and alternative options. This may happen as part of a routine appointment or sometimes a separate, more focussed appointment is arranged. The assessment will involve a detailed history and examination focussing on the milk allergy and may require skin prick or blood tests for milk allergy if these have not been done for more than 6-12 months. It will also require a detailed asthma assessment and where appropriate, lung function testing as any child whose asthma is not extremely well controlled, would not be suitable for treatment. If your child is over 14 months and has never been exposed to baked milk, it may be necessary to clarify if your child is able to tolerate this, by consuming a milk containing fairy cake under supervision. If they can, this suggests a different, easier strategy for desensitisation may be used (regular consumption of baked milk). If your child cannot tolerate milk in the baked form, and is otherwise suitable, then desensitisation treatment can be considered and the amount of baked milk that caused a reaction will be taken into account when deciding at which level desensitisation should start (ideally just a little way below the level that caused the reaction).
• Initial introductory session – this is the start of the process and involves a detailed discussion with our specialist dietician and will cover areas such as how to make and correctly measure the doses needed, how to manage reactions and all the other logistical aspects of the treatment. This session may take place in person or virtually. You will be provided with written information to support what you learn.
• Consent – if it is felt your child is suitable for the treatment, you will be asked to sign a consent form to indicate that you have fully understood the risks involved. Treatment cannot start without this, but you have no obligation to continue the treatment and can stop at any time. A copy of the consent form that you will be asked to sign is attached to this leaflet.
• Treatment Initiation – This would start with an initial visit where the first, small amount of milk (baked or plain) is given under medical supervision by one of our specialist nurses or doctors, with Prof Fox also present. Depending on the initial risk assessment, this visit may take place either at a regular out-patient clinic or at our specialist day case facility at Great Ormond St Hospital. You will also be prescribed an adrenaline auto-injector (eg Epipen) and trained how to use it (if you don’t already have one), in case of a more severe reaction. If this first dose is tolerated, you will be asked to give the same amount of milk daily at home for around 2 to 4 weeks. You will be given details of exactly when and how to do this and what to do if there is any reaction. You will have contact details with an assured 1-day response time, for queries where an answer is required before the next day’s dose as well as a regular check in call.
• Updosing – If home dosing goes well, then you will come back, under the supervision of our team, to try a bigger dose. If this is well tolerated, you will then give the same dose daily at home for a further 2 to 4 weeks before returning again. The number of visits required will depend on the bespoke schedule designed for your child – the more sensitive they are, the lower the starting dose will be and the more incremental increases/visits they will need, but typically its around 9 visits in total. After successful increases, your child should be able to tolerate the equivalent of 1.3g of milk protein in the baked form.
• Maintenance – If the treatment has been successful, a further appointment with our specialist dietician is scheduled to discuss integrating baked or plain milk into the regular diet. Regular exposure is required to maintain the effect of the desensitisation.
• Follow up – an annual follow up is recommended to monitor progress, specifically for signs of improved tolerance to milk that would allow for further relaxing of the diet.

What if oral desensitisation doesn’t work?

This treatment does not work for everybody, but if the dose cannot be increased above a certain point because of recurrent side effects, then this dose can be continued for 3 months and then increasing attempted again. This can often be successful. Even if only limited desensitisation is achieved, this can still protect from reactions due to accidental exposures. It is also possible for smaller doses, if required daily for a long period, to be changed to an easier alternative eg chocolate button. If your child is unable to progress the plain milk desensitisation, you may be advised to switch to the baked milk desensitisation method.

Is oral desensitisation the right thing for my child?

OIT is not right for everyone. If your child has suffered severe reactions, especially to very small exposures to milk or has poorly controlled asthma or other illnesses, then this treatment is not suitable. If your child’s allergy tests are very high (eg skin test >9mm or IgE >50) then this increases the change of problematic side effects and reduces the chance that the treatment will be successful. If you are unable to commit to very reliable daily dosing then this would not be suitable.

If your absolute priority in managing your child’s milk allergy is avoiding any reactions, then a policy of strict avoidance is probably best. If you are prepared to accept a regular daily treatment, with occasional mild allergic reactions then OIT is worth considering.

What is the cost of oral desensitisation?

As a treatment for allergy, it is unlikely this will be covered by your insurance, which normally only covers diagnosis of allergy although there are exceptions. We are hoping that this will also improve over time. There is a separate document which outlines the cost.

Any initial assessment for suitability for desensitisation will be charged as a regular consultation, with any tests such as skin prick testing, lung function or challenge testing charged at the usual practice rates (available on our website).

If you are unsure if you wish to progress with a desensitisation process, an initial detailed consultation with our specialist dietician is recommended and the cost of this will be deducted from the price of the treatment if you decide to go ahead.

Once you decide to progress, there is a package cost, which includes the introductory session, treatment initiation, all up-dosing visits, ongoing support and any additional visits required (for example if there is a reaction to the initial dose and a lower starting dose is needed) as well as a final session with the dietician. The package does not include annual follow up after conclusion of the treatment. The price may be more if additional visits are required due to your child being very sensitive to egg. Refunds are available if less visits than expected are required.

In some cases, for example, where there is a history of anaphylaxis or other risk factors, there may only be the option to perform the treatment at our Great Ormond St Hospital Day Case facility. This will have a cost implication of and will be discussed beforehand, on an individual basis.

Next Steps?

If you have any specific questions, please email us on info@allergylondon.co.uk or if you would like to book an assessment visit, please contact us on 020 3758 9160 or by email. If you have had an assessment visit and are suitable for treatment and would like to arrange an initial introductory session with our specialist dietician (this does incur a cost of £150, which is refundable if you progress to the treatment), then please contact Karen Wright on karenwright@eatthriveflourish.com

Further Reading

The most useful scientific articles to read would be the 2 systematic reviews of milk OIT:

Brozek JL et al. Oral immunotherapy for IgE-mediated cow’s milk allergy: a systematic review and meta-analysis. Clinical & Experimental Allergy. 2012 Mar;42(3):363-74.

Calatayud CM et al. Journal of Investigative Allergology & Clinical Immunology 2014;24(5): 298-307.