Cole's immunotherapy story
Introducing Julia Scott
Julia's son, Cole, first began his oral immunotherapy journey at Cambridge Peanut Allergy Clinic in December last year. Julia was recently invited to speak at the FARE conference, where she shared Cole's allergy story and their immunotherapy diary. She has kindly given us permission to share the transcript with you below.
The Scott Family's story
Our son suffered his first and only anaphylactic reaction to peanut at the age of 15 months old. We were afraid and isolated and had a steep learning curve. However, as our son grew up, he became careful and safety conscious about his allergy and as a family, with the benefit of hindsight we all managed it really well.
So, why did we decide to join an immunotherapy programme?
We obviously didn’t want our son to die, and there is always the risk of accidental cross-contamination. Cole was also afraid, he really understood the severity of his allergy. Two years ago Cole moved to a new senior school and had to make new friends, whilst at the same time his hormones were kicking in. He just wanted to fit in with his new friends and be the same. He felt peer pressure to explore new places, but felt uncomfortable about that, as he was anxious about having to use his EpiPen on himself, by himself. After a while he stopped wanting to go on school trips, pretending to be ill.
Over time Cole became anxious and withdrawn. It was then that we discovered that there had been a couple of incidents at school, which parents of many anaphylactic children across the world are likely to be familiar with. Cole had been taunted on a school trip by a pupil who held a peanut magnum near to his face, while on a separate occasion another pupil had naively thrown peanut M&M’s at him. The challenges for Cole now were not only about managing his own safety, condition and anxiety but also working with the school to educate his peers.
After some hasty research, we discovered that Cole was eligible for immunotherapy and we were in the fortunate position to be able to self-fund it.
Stage 1: Our initial consultation involved blood and skin prick tests, then his medical history was looked at and the clinic made sure his asthma and hay fever was under control. On December 5th last year we arrived at the clinic for Cole’s first dose. The staff taught us how to open the tiny capsule, sprinkle it into a small amount of yoghurt, mixing the peanut protein so that all the particles are coated. Then Cole was asked to eat it…this was the scary bit, after 12 years of avoiding it! However, he was a superstar and ate it quickly. He had a slight tingling sensation on his tongue that only lasted for about a minute. He then chilled out quietly at the clinic, and they monitored him for any further reactions. That 2-hour quiet time after a dose is really important. After the 2 hours was finished, we were sent home with our supply, and we continued the process at home for the next two weeks.
Stage 2: Two weeks later, we were back at the clinic for an up-dose. It doubles each time. No reactions, only an issue with our son discovering that he really isn’t a fan of yoghurt…. This is quite a common problem. He still hates yoghurt!
Stage 3: Another two weeks later, and we arrive at the clinic having moved on from yoghurt. He’s now eating his medicine with custard, rice pudding, jam on toast, smoothies, applesauce!
Stage 4: By stage 4 the side effects are starting to hamper him. He feels generally quite poorly as if he’s coming down with a bug. He’s absolutely exhausted, and we had calls from school, which was very supportive, saying that he’d been having a 3-hour nap in the medical centre! His limbs felt weak and heavy, which as a competitive swimmer, really impacted his training.
Stage 5: Cole started to have bouts of random vomiting. Not during the two hours after the dose though. We gradually found that a pattern emerged and it tended to happen if his tummy was empty…so before lunch or mid-afternoon time. Once we established what was happening, we made sure he had access to plenty of snacks. They needed to be really plain carbs or protein. Definitely nothing high sugar like sweet biscuits or cake, which made him instantly throw up. As soon as we got this issue under control, we moved on.
Stage 6: The equivalent of one whole peanut per day. The problem now was that Cole could taste and smell the peanut, which also brought with it what I can only describe as panic attacks. He would get himself really worked up about the impending daily dose. So, in the end, I contacted a lady that specialised in Cognitive Behavioural Therapy. She worked through his anxiety issues. In basic terms, now he could taste and smell the offending peanut, he was afraid he would die. After 4 sessions with her, making an anxiety chart and giving him the responsibility of making a list of strongly flavoured foods that he could try disguising the peanut protein with, we were back on track! Incidentally, ketchup, BBQ sauce and savoury foods work really well.
Stage 7: Now that Cole felt more in control, he sailed straight through the stage 7 which is 2 peanuts, with zero issues! Within two weeks of stage 7, Cole's side effects completely disappeared and he was back in the swimming pool training hard.
Nowadays: Cole has become a different young man. He is more confident, less stressed and visibly walks taller. He enjoys taking trips into town with his mates, he’s now enjoying going on school trips and takes the school bus. Best of all, Cole does not feel different to any of his friends.
We recently had our 1-year check-up at the clinic. Looking back reflectively, I can honestly say that I would absolutely recommend this to others with a peanut allergic child. For Cole, it has been completely liberating and offered him the freedom that he wouldn’t have had otherwise. For us, watching him unravel and flourish has been the greatest gift. And whilst it has been a really tough year, it truly has been all worthwhile!
Real-world experiences at the Cambridge Peanut Allergy Clinic and stories like Cole's help us build on our phase 2 study and prepare for a phase 3 programme to confirm our results and extend the reach of oral immunotherapy to other age groups.
To find out more about the Cambridge Peanut Allergy Clinic, click here.
To learn more about Camallergy and oral immunotherapy, click here.