Oral immunotherapy is an innovative new treatment for life-threatening peanut allergies. After an assessment, the child is given a tiny dose of peanut protein under medical supervision. They continue to take this dose at home. Then, the amount of peanut is increased very gradually. Each step up is given in the hospital, until the child can eat the equivalent of 2 peanuts. Completing the two-year course of treatment can massively reduce the risk of an allergic reaction for peanut allergy sufferers. Today, Amy shares the highs and lows of her son Jack’s oral immunotherapy treatment at a specialist private clinic in Cambridge in the UK.
I’m Amy, mum to Jack. I have decided to start to write and share Jack’s daily journey on social media. He has a severe nut allergy and he started oral immunotherapy for peanut allergy treatment in 2018. You can follow our story on Facebook and Instagram.
Discovering Jack’s Peanut Allergy
So 7 years ago, out of the blue, Jack (now 11) has his first major reaction. We were enjoying a family meal with my two children, mum and my sister in the popular Gourmet Burger Kitchen restaurant. They offer peanuts in their shells to eat at your table. I can’t say I ever thought about nuts and the kids eating them but they fancied having a try and started breaking them apart !
Within seconds Jack started coughing and started to be sick. We rushed him to the toilet. My sister advised me to go into the shopping centre and get some antihistamine just to see if it might help. Luckily she is a nurse and recognised the signs of an allergic reaction. He was now getting hives on his neck and around his cheeks and mouth and eyes swelling.
Off I went as quick as I could … When I returned Jack was sat outside the restaurant with paramedics on oxygen! He was having an anaphylactic reaction . After what seemed like forever and some antihistamine, the reaction started to calm. After he was checked out in the ambulance we were allowed home.
That was the day that changed our life … Our three year old now was always accompanied by a medical bag with two shots of adrenaline at all times.
Adapting to Life With Peanut Allergy
You never think about checking food packets for ingredients but from that day we check everything even if it’s been checked 1000 times before.
He has become a very sensible and grown up boy in regards to his allergy and very untrusting. I think the fear of that day of his first reaction has scared him for life and he will never forget it . In the words of the allergy nurse about an allergic reaction you feel ‘a fear of impending doom’ – terrifying for anyone, let alone a young child. He asks constantly if I have checked food and will say he’s not hungry rather than take anything off anyone.
School was a big step for us – as parents as you trust they will keep your child safe . We have learnt that you can’t trust anyone!! They have made some huge mistakes and lucky escapes over the last 6 years. Hopefully they have learnt a bit too without hurting my child.
Last year we took the leap to go abroad on holiday, something we have never done before. We had a great time even if he couldn’t have all the food and lived off Pringles. We still feel happier at Center Parcs or self catering in the UK. Eating out is hard but we have trusted restaurants that can provide allergy menus. If they can’t we don’t stay , we never assume food is okay.
The last 12 months there has been a lot of press about allergies and unfortunately some very sad stories of young lives lost. Bringing me to tears as it’s so close to home.
Oral Immunotherapy for Peanut Allergy
With secondary school next year we looked into a private treatment solution called ‘oral immunotherapy’ that should help desensitise the patient to a peanut reaction. So in 2017 we travelled up to the Addenbrooke’s Hospital in Cambridge to see Dr Clarke and assess Jack’s suitability to join the course. We were accepted and started in the summer last year.
It was a tough schedule with two weekly trips to Cambridge – 3 hours from us by car. We made it an adventure taking nannies and aunty and trying out some hotels. It was easier travelling up the night before as Jack was going to be a big brother at Christmas and I was tired (and sick).
The idea is to take peanut protein each day to help the body create tolerance. We had 5 stages. Each stage was 2 weeks apart with the ‘upstaging’ happening in the clinic under full medical supervision. Jack did amazingly well. He only had one stage (3 I think) that caused extreme vomiting in clinic which meant another week on the lower dose.
Coping With Oral Immunotherapy Treatment
He has always found it hard and this did not help with his confidence. I would say this is when it got hard and Jack hit a mental barrier. Jack would scream at me, “I hate this, why do I have to have an allergy!” and “I want to die! I hate myself for having a allergy!”, Why me?”. The fear of having a reaction is a daily trauma for Jack. Every day he says, “I am going to have a reaction” during treatment .
We aren’t flush with money, and as this program is sadly not on the NHS we have had to borrow and get a loan. But as a parent would agree, you would find the money – no matter what – for your child to be safe.
It’s tough, trust me, to see your child hysterical, crying, shaking and panicking because of something you have made them do. It breaks your heart. I have tried bribery (Fortnite V Bucks!), encouragement, punishment , shouting and even crying myself to convince him he’s going to be okay. He is okay – he gets itchy mouth, saliva and sometimes he’s had vomiting (usually when tired) but that’s minor.
Only one dose scared me thinking we were going to have to use an Epipen. He said he felt strange and sick after a peanut dose… Luckily the antihistamines did the trick and I stopped holding my breath!! He had a gastro bug the next week and ended up in hospital, so his immunity must have been low.
Now I can answer any questions about how the treatment works, cost, programme etc. But there has been no support to help you cope mentally. This needs to be organised yourself and I would say this is a huge negative of the program. A better support network or family ‘talk’ group would be good . Make Jack feel he isn’t the only one going through this !
We hope by Jack sharing his journey more families will experience the ups and downs and maybe consider it themselves. We can’t thank Dr Clarke enough for the results so far from oral immunotherapy treatment at the Cambridge clinic. Hopefully someday it can be available on the NHS.
Freedom From Fear
Jack can now take the equivalent of two peanuts every day!! A year ago, 2 peanuts would have probably killed him…..To date we have not had to use an epipen and hope we never do. But he will carry them for life. He will get there and everyday is one step closer to a safer future for Jack.
Me, his dad, brother and new sister are extremely proud.