Oral Immunotherapy (OIT): In awe of the parents battling food allergies

I have personally fought a battle with food allergies my entire life. As a baby, I spat out orange and refused to eat it when being weaned. That was the start. Growing up I was considered a fussy eater as I refused to eat fruit in general and I wasn’t a fan of many vegetables either. As our diet tended to consist of meat, potatoes, vegetables and fruit I didn’t tend to eat a lot. In England, all celebrations tend to involve fruit. Christmas cake, wedding cake, even birthday cake tend to be rich fruitcakes. Children’s birthdays would be celebrated with fruit, ice cream, and fruit flavoured jellies. It was a privilege to be given a Satsuma (Clementine type fruit) in your

In England, all celebrations tend to involve fruit. Christmas cake, wedding cake, even birthday cake tend to be rich fruitcakes. Children’s birthdays would be celebrated with fruit, ice cream, and fruit flavoured jellies. It was a privilege to be given a Satsuma (Clementine type fruit) in your stocking at Christmas. Children would be given milk, water or fruit flavoured squash to drink (squash is a drink made from a syrup that is diluted with water, somewhat likCool-Aid). Through out it all I avoided it.

At 21 I developed atypical asthma and my doctor ordered allergy testing. We included food for the first time. Oddly enough I didn’t react to almost any of the normal allergens aside from penicillin. However, when they started to test me for citrus I had my first anaphylactic reaction when they simply opened the testing bottle. We never got it anywhere near actually doing a scratch test. Concentrated citrus simply being airborne was too much for me. I never have been able to be tested for it properly. However, I was informed that it was one of the more extreme allergic responses ever seen. That was the start of my carrying Epi Pens and being very, very careful and hyper vigilant around citrus. I also turned out to be allergic to berries and intolerant to most other fruits.

Initially, I needed to touch the fruits I was allergic to in order to react, so it was relatively easy to avoid. I’m still that way with berries. However, over time my allergy to citrus became more severe. Thankfully medications also improved and new ones developed so I’ve mostly been able to cope with a combination of very high dose anti-histamines taken daily, asthma medications also taken daily that work specifically on allergy triggered asthma and by being very vigilant.

Unfortunately, in the last few years, it has become more and more difficult to manage with the increased emphasis on “natural products” and in my specific case, the use of citrus-based cleaners. I’m fortunate, in that my workplace has accommodated me and changed all their cleaning products to not use citrus. My students and colleagues, are careful to avoid it and don’t bring citrus to my classes or office area. They don’t have it at staff events that I’m due to attend. I still have days where I’m confined to my office for a few hours because somebody has had an orange in a common area and I have to wait for our air system to clear it out enough that I can get through the area safely. But, for the most part, work has been safe for me.

While I haven’t trained Kai, my service dog, to scent citrus for me (it’s far too prevalent for his nose and he’d be exhausted from alerting) he is naturally picking up on something in my physiological reaction quicker than I realise and has started pulling me away from exposures. It’s the only time that he will ever pull when working so even when I’ve got brain fog from the exposure I know that there is something wrong. Normally, if I can get away from the exposure quick enough and take extra antihistamines I can avoid a full anaphylactic response. I don’t ever touch it. I don’t buy fresh vegetables in a grocery store as too often people have touched the fruit before they touch the vegetables. I buy frozen or canned usually and as a treat in summer, fresh vegetables from the farmers market as long as they don’t bring in citrus from abroad!

Normally, if I can get away from the exposure quick enough and take extra antihistamines I can avoid a full anaphylactic response. I don’t ever touch citrus in any form. I don’t buy fresh vegetables in a grocery store as too often people have touched the fruit before they touch the vegetables. I buy frozen or canned vegetables usually and as a treat in summer, fresh vegetables from the farmers market as long as they don’t bring in citrus from abroad!

Despite this I’ve still had many serious anaphylactic reactions. Twice as an inpatient in hospital (fresh orange and grapefruit) and most recently in my doctor’s waiting room thanks to an orange based cleaning spray. As is common with allergies my reactions have got more serious each time. My last one, in May, was incredibly fast and has caused incredible complications in that I’ve developed Reactive Airways Dysfunction Syndrome (RADS) from it and I’m still off work 3 months later.

As a consequence of all this I have kept a close eye on potential treatments for allergy. It was wonderful to see success in desensitization for some medications starting to take place a few years back. Unfortunately by the time they had a successful protocol for desensitising to penicillin my allergy to it had crossed the line beyond the point at which they would consider trying it on me.

In the past few years Oral Immunotherapy (OIT) and Sublingual Immunotherapy (SLIT) has been gaining recognition and success. Good quality research is being conducted and published. As a result I have joined several Facebook groups that are dedicated to OIT. It is fascinating to see parents making the decision to go through the OIT protocols with their children (which can take months to several years) in their battles against food allergies.

These parents are true warriors.

They have often identified the allergies when their children were babies and taken on allergy friendly diets while breast-feeding to avoid exposing their children. They then become extremely vigilant and in many cases their children have never experienced a full anaphylactic response to their allergen due to their parents care. However, living that way is exhausting (as I know!). So they turn to OIT to find freedom. The success rate from OIT is now over 90%. Most of which is attributed to the dedication of the doctors involved. It’s common for parents to report having a concern after a daily OLT dose with their child and contacting their OLT doctor on a weekend or holiday and that doctor to immediately return their call. It’s common for the children involved to comment that they’ll miss seeing the doctor and staff once they’ve completed the protocol, as they have become friends. It’s so rare these days, outside of terminal care, to see doctors develop such strong relationships with their patients and families.

I am in awe of these parents, fighting food allergies on their children’s behalf. Often they travel extensively, and often, sometimes moving countries or states, to access OLT. The end result though is that they can relax. Their children get to go to school, on summer camps, to school trips, to sleepovers, to take part in a normal childhood without having to be hyper vigilant over everything they eat or come into contact with. They can take part in activities without having to have a parent present, as nobody else is willing, or legally able, to take on the responsibility of administering an Epi Pen if needed. The freedom brought by OLT is definitely worth it to these families. Their children will always carry the risk of a reaction, and still need to carry an Epi Pen and maintain their desensitisation by eating the allergen daily after the protocol has been completed but so far, as long as they maintain there has been next to no reported anaphylaxis after completion of OLT.

Their children will always carry the risk of a reaction, and still need to carry an Epi-Pen and maintain their desensitisation by eating the allergen daily after the protocol has been completed but so far, as long as they maintain there has been next to no reported anaphylaxis after completion of OLT.

I’m envious.

Most of the research is concentrated on children. Few doctors are offering OLT for adults. I assume that this is because their immune systems are usually healthier and they tend to not have had as many allergic responses as us adults.

I’ve looked into OLT for myself but so far, my allergies don’t fall into the categories and types that those doctors considering adults are willing to treat. Remember how severely I reacted when they tried to do a skin test when I was 21? I have never been able to complete an allergen test for citrus, as I can’t tolerate the exposure to the test product even being airborne.

Citrus also isn’t in the top 9 allergies which cover the majority of all allergies. These are milk, egg, soy, wheat, peanut, tree nuts, fish, crustaceans and sesame seed. So for fairly obvious reasons OLT protocols are concentrating on these 9 allergens. Also for OLT to be effective your allergy has to be IgE mediated. From the blood tests done when I have had a reaction it seems likely that I also fall in the category of being non IgE mediated which means that OLT would not be effective for me.

I’m also atypical once again in that I have both intolerance (gluten, lactose, and some fruits) and allergies (citrus, berries, latex, and many medications) whereas people are usually either intolerant or allergic.

So for me I have to continue to be very vigilant about what I eat, touch and come into contact with even in a very limited exposure.

With RADS life has become even more complicated as I can now react to things that I never reacted to before. Seemingly, totally randomly: one day I will be fine with it, and the next I won’t. As a result I am currently pretty much housebound, as I have no way to control potential triggers and exposures outside of my own home. Even a short trip to the grocery store the other night (which took 45 minutes rather than the 20 it would usually) took me 18 hours to recover from.

RADS normally improves with time, a long time. At minimum it’s 6 months, more often 12-24 months and in some cases the damage is permanent. I’m hoping for the shorter time prognosis obviously.

In the meantime I’m living vicariously. Enjoying watching my friends post pictures and comments on their summer holidays and travel.

I’m also enjoying watching as children, and their families, complete OIT protocols and are attending summer camps, flying as part of a family vacation for the first time and starting the new school year without fear of allergy. While it may never be available, or safe, for me to use it gives me so much pleasure to see families being freed from the life sentence of serious food allergies.

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The Food Allergy Research & Education Network (FARE) is one of the best resources for anybody dealing with allergies, though it is US based. Their Emergency Care Plan is the best template that I have ever come across and I’d recommend it to anybody dealing with allergies.

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Finally, I am going to implore anybody who has ever been diagnosed with an allergy and prescribed an Epi-Pen to please, please carry it. There have been two cases recently of restaurants exposing customers to allergens deliberately. In the UK case the customer died. In the Canadian case they survived. In neither case did they have their Epi-Pen on them at the time.

Allergies kill.

Untreated anaphylaxis can kill you within 5-30 minutes.

If you’ve had an allergic response once, your next response could be far more serious which is why you were prescribed an Epi-Pen. Please don’t die because you didn’t take it seriously.

Carry your pen – let people know that you carry one and for what.

Know how to use it! (Blue to the sky, orange to the thigh, swing and hold for 3 seconds).

If you think you, or somebody else, is having an anaphylactic reaction use an Epi-Pen – don’t wait! Use it and call emergency services.

A Biphasic (secondary) response can happen hours later so you need to be monitored.

You can’t harm somebody by giving them an Epi Pen when not needed; you will contribute to their death if you don’t give it when needed.

If symptoms don’t ease before you get to medical attention, or they get to you, use a second Epi-Pen.

All of my Epi-Pens are carried in pairs as I usually need two, alongside liquid Benadryl and asthma inhalers.

Untreated anaphylaxis kills. Studies show median times to cardiorespiratory arrest after exposure to the offending stimulus were 5 minutes after administration of contrast media or drugs, 15 minutes after an insect sting, and 30 minutes after food ingestion.

You don’t have time to debate whether to use an Epi-Pen or not. If you’re mouth or throat is swelling at all – Use it! Call emergency services and get help. Now! No discussion, no debate. Use the Epi-Pen and get help now!

Think about it, if you’re exposed to a drug that you’re allergic to you have less than 5 minutes to be treated. If your Epi-Pen is not physically on you, how can you get it and use it within those 5 minutes?

Carry your Epi Pen; know where it is and how to get to it fast. Know how to use it. The needle is so fine – it doesn’t hurt. Better a slightly sore thigh than dead!

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