By Caoimhe Ryan

In July 2023, We started Palforzia (peanut) OIT at Great Ormond Street Hospital, London for our 7 year old son, Stevie.

getting started

We had a zoom call with Professor Fox in January 2023 where we discussed Stevie’s medical history, the risks and benefits of the OIT treatment and what the Palforzia treatment actually involves in terms of hospital visits and daily maintenance at home. We can honestly say that Professor Fox put us at complete ease, he explained everything so we could understand the treatment, and spoke to us in such a kind and understanding way so we knew we were making the right decision.

Like any parent bringing their child for allergy treatment, we were nervous and often questioned if we were doing the right thing for Stevie, but the nerves were quickly replaced with a sense of ease and eagerness to start when we met the wonderful team at our first appointment in the clinic.

Initially we booked one OIT appointment a month but after a bit of thought we decided flying back and forth every 2 weeks would be best, that way we could complete the treatment in 6 months. This was a better decision and we’re glad we did it this way.

Stevie’s feelings

We live in Dublin and there are no hospitals or clinics offering Palforzia treatment here, so we knew the best way to get Stevie started with peanut OIT was to join the treatment in London. Both myself and my husband Steve had a great chat with Stevie and explained the whole OIT process to him, how we would travel over to London every 2 weeks – in typical Stevie form he said, “Yeah lets do it, it’ll be fun going to London!’’

At the start it was strange for Stevie to eat something that he was always told to avoid but he has really taken it in his stride. When Stevie returned to school in September, we started to fly over to London and back in one day. Whilst it’s a long day at times, Stevie really doesn’t complain so we really feel that this plan has worked for him.

Thankfully Stevie hasn’t had any side effects with Palforzia OIT. The team at the clinic keeps a very close eye for any reactions during the treatment.

A Positive experience with a few hurdles

It has been a positive process for Stevie and our family, yes it’s been hard and tiring at times traveling over to London along with the worry if Stevie will be ok with each up-dose but overall the treatment has been worth it for Stevie and our family.

Our first appointment was booked for June 2023 but Stevie ended up on antibiotics for a chest infection so we had to postpone the start date to July. We changed our flights, accommodation and made the decision that only myself and Stevie would travel over in July, while Steve stayed home with our 3 year old daughter.  At the time it felt like it wasn’t the ideal start to Stevie’s OIT journey but July came around so quickly and before we knew it we were heading to the airport!

Hope for the future

Whilst Stevie will still have to carry his EpiPens, we know that on completion of the Palforzia OIT process he will have built up a ‘layer of protection’ to accidental exposure, this can only be looked at as a positive result and he is excited to try new foods that ‘may contain’ peanut.

It has given us confidence when traveling by airplane, since July we have taken 18 flights back and forth to London, so while we are still vigilant about notifying airline staff of his allergies and bringing our own food, we feel more relaxed with the whole traveling experience.

It was amazing to see how well Stevie took to the Palforzia, it didn’t faze him and we were more relaxed when every up-dose appointment came around, but still always keeping a close eye on him.

It’s nice that there are other kids and parents in the treatment room going through different stages of OIT. It nomalises the treatment process seeing other children doing OIT.

Family life on treatment

Stevie loves playing sports and running around with his friends and cousins but for two hours after his daily maintenance dose he needs to remain rested and keep his heart rate down, we were worried how we would work this into our daily lives. However, we got into the swing of things and we made it work around our family life. Some days took a bit more planning than others, like if there was a party to attend but on those days we gave the daily dose earlier in the afternoon so he could run around at the party with his friends.

One thing we really had to keep an eye on was Stevie’s chest and make sure he wasn’t developing any more chest infections because he has been prone to them. Together with our doctor in Dublin we got a great asthma plan and that really helped keep his chest clear throughout.

At the start, we would have considered travelling to London as the hardest part but now looking back on the journey, it was one of the best things. We had great fun and created some really happy memories with Stevie.

Once we are up to a highter dose for peanut, we will be starting OIT for sesame.

What tips you would give to another family considering travelling a long way for OIT?

  • If you can, stay a day or two longer in London to see some sights, visit museums and make some special memories together.
  • Take lots of photos!
  • If travelling, Pack extra snacks as kids are always hungry.
  • Bring Ipad, book, lego for the hospital appointments – it’s a good distraction.

*Please note, Caoimhe’s story is written in her own words and details her personal experience and opinions. The information above has not been signed-off reviewed by an allergy clinician.

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