Living life to its fullest with oral immunotherapy

 

I'm Tamara, mum of twin boys, Oliver and Aiden (9 years), who both have allergies to nuts. We have been on the immunotherapy road for 3 years now and would like to share our story with you.

Introduction

Oliver was diagnosed with food allergies when he was about 3 months old. Very bad exczema over his whole body and spitting out breastmilk were the early signs that something wasn't right. We were lucky that our pediatrician worked with an allergist, so we got a quick diagnosis and found out that he was allergic to eggs and some nuts (only 3 got tested).

We continued our lives but still did not really know much about food allergies and how dangerous they can be. Avoiding eggs and nuts in his diet and mine signficantly improved his skin. At the age of two, I very naively let him have a bite of a cashew nut cake as he hadn't been tested for cashews. Immediately after the bite, his eyes started swelling up, his nose started running and he cried. I had no medication bag and no idea what to do. Fortunately I had time to drive to the pediatrician. In the waiting room, Oliver started coughing and then vomited, all signs of anaphylaxis. The pediatrician administered adrenaline and we were taken to hospital in an ambulance.

That's when our lives changed and our "allergy journey" really began. We found out that Oliver was severely allergic to all tree nuts and peanuts. We started learning about food allergies (and still are!), made sure that our emergency medication bag was always with us, learned how to manage his allergies at school, how to go about birthday parties...

Starting oral immunotherapy

Three years ago we started oral immunotherapy (OIT). This means ingesting tiny amounts of an allergen, specs that can barely be seen, and increasing the dose very slowly over a longer period. The aim is to retrain your immune system over time, so that it becomes more tolerant. After a blood test, prick-test and food challenge, we felt fortunate that Oliver got the ok to start the process, and we discussed his treatment plan with the allergist.

Starting such a therapy is quite daunting, and not everyone feels comfortable doing this. We had a few years to mentally prepare ourselves and felt ready.

“Despite feeling a little anxious, at the same time I felt excited and positive to finally have the chance to actively do something about Oliver's allergies”

The alternative would probably mean that Oliver will always live with severe nut allergies, and the consequent risks. Trying to get him to desensitise to nuts, will hopefully mean that, if he would accidentally ingest his allergen, his reaction will not be as severe.

We had talked to Oliver about OIT for a long time, so he understood what was going to happen. But we didn't want to make too much of a big deal out of it, to avoid making him feel too anxious. It would become part of our daily routine for a very long time (about 1,5 - 2 years - per nut, and perhaps for life). So we tried to be positive about it and tell him why it is so important.

“But how to keep an energetic 5 year old calm for 2-3 hours after eating his daily dose of nuts?”

This is important during OIT, as excercise can increase the onset of a reaction. How do we plan this around school and his activities? Will we still be able to travel? It seemed like a challenge but one that we were determined to take on. We started OIT with pistachio nut, in the hope to increase his tolerance to cashew nut at the same time as the proteins of these nuts are similar. 

Living a full life
Three years fast forward, and we are well into the treatment. We introduced cashew nuts 1,5 years later and have been seeing positive results. His tolerance to pistachio and cashew nuts have both increased. Two years ago, Oliver's brother was diagnosed with allergies to hazelnuts, walnuts and pecan nuts. It was frustrating but we felt less anxious as we had learned so much about allergies already and felt more in control. We immediately started OIT with him too. So currently I have a "nut lab" at home with pistachios, cashews, hazelnuts, walnuts and pecan nuts! 

“OIT has definitely not stopped us from doing the things that we love, such as travelling”

In the last years we have travelled to a remote island in the Caribbean, to the States and been on many other holidays. I make sure to prepare all the doses in advance. I have learned to keep them in my hand luggage in case a checked suitcase goes missing. We always joke that security might think we are drug smugglers with all the little pots of powdery nuts! The day we travel on a long haul flight we skip the nuts for a day. The next day we might re-start with a half dose or continue with the usual dose. This can be discussed with the allergist.                    

On holiday we usually go out for the day and when we come back late afternoon we give the boys their nuts, so that they can have their "quiet time". But sometimes we change the schedule depending on our plans, so we can stay flexible.

Even though I have the occasional day when I wish that we didn't have to do this every single day or wish for a small break, I would like those of you who are worried about how to manage OIT to know, that it is still possible to have a good life. It takes some carefull planning (but those managing allergies are used to this!) and some getting used to the new routine. Of course the treatment might not be for everyone, but if you are considering it and have questions about it, reach out to LAN who can share their experiences with you. This is what I did when we started 3 years ago and got great advice and even ended up actively involved with LAN!

Here are my tips for those preparing to start oral immunotherapy:

• If you have the option, start OIT in the winter, when you are inside more and might have less activities going on
• Try not to plan any holidays in the first months after starting OIT. This way you should be well into your programme before your first travel
• Try to give your child their dose while they have their "screen time". This helps if they don't like the taste and also keeps them calm for the first part. Plan some quieter activities, such as board games, Lego, crafts.
• Prepare the portions once a week, preferably when it's quiet at home as, especially at the beginning, it requires some concentration weighing the portions
• Get some small pots for travelling, so you can prepare all the doses in advance. If you are still increasing the doses, make sure to label them. If you are doing OIT for multiple children, make sure to add their initials or colour code them so that they don't get mixed up.