It's all a bit NUTS! Our Why :)
In 2020, in the height of lockdown, Brodie had a bite of a "naked" cashew bar and of course we thought nothing of it - she'd eaten nuts a few times since she was a baby.
Even when she began coughing and grabbing her throat, we thought she just choked a bit. She vomited and quickly, her body began to swell and become so red that she looked as though
she was scalded head to toe. We began to realise that this was an allergic reaction and in a panic, we accidently gave her 4 times the maximum dose of piriton before calling an ambulance.
By the time we arrived at the hospital, her bright red body was now also covered in angry burning hives and her eyes and ears had swelled up. It was awful, but we still didn’t appreciate
how much this day would mark a change in our daily lives.
We saw Alder Hey the next week under an urgent referral and after tests we discovered that Brodie was severely allergic to cashew and pistachio. We were given EpiPens, told to
carry two with us at all times, taught about anaphylaxis and how to treat it and told to avoid these nuts at all costs. As Brodie got older, she had a couple more reactions and
hospital visits and so it came to light that she is also allergic to peanut, walnut, pecan and possibly citrus seeds.
Frustratingly, last year Brodie also reacted after kissing her sister who had eaten hummus many hours earlier and we realised that sesame was a new allergy - something that we
had anticipated and dreaded. Sesame is our “least favourite” allergy - it's in SO much food, tahini is very potent and people don't have the same awareness for sesame allergies
as nut allergies. Sesame is just as risky as nuts. She's also since reacted to the flu jab, antibiotics and “hair nit” shampoo. Overall, she is just a very sensitive little girl!
On reflection, all the signs were there! Severe Eczema as a baby, family history of allergies/hay fever/eczema, viral wheeze, cow’s milk protein allergy as a baby. Luckily,
Brodie’s sister doesn’t seem to have any allergies.
We are a couple of years down the line now and while we still have a fun filled family life, it can be really challenging. We have to check everything she eats. Everything. Every
time the ingredients can change without warning. For instance, Cadbury’s chocolate: some is safe and some is not, depending on which factory it’s made in!
This means that we can’t leave Brodie with anybody without training them on EpiPens and checking labels, which is awkward for a school aged child. Nuts are everywhere - even in
places like hand wash and SMACKERS lip balms contain sesame. Most people are amazingly supportive and Brodie’s school has been incredible, but we do face challenges from people
around her as they often forget to check packets and offer her food, they challenge us on why we have to check everything, saying “it’s just a vanilla cupcake!”. However (for
example), Lidl’s vanilla kid’s cupcakes have peanut powder in (which is ridiculous and another story!). Trying to filter what adults say in Brodie’s presence can also be a
nightmare - we’ve had “I couldn’t cope with that!” “that’s so scary” “did you hear about the girl with sesame allergy who died on the plane” “would she die if I had peanut butter
now?”. It's intense! And as Brodie gets older, her awareness is growing and anxiety is creeping in. We want her to feel in control and empowered, not afraid. I often ask her, “who
is the boss, allergies or Brodie?” and she says “Brodie is the boss!”. She’s not going to grow out of her allergies, unfortunately so mentality is everything.
The reality is we have to live with a certain level of risk, worry and awareness - every party we need to have one eye on her but it’s normal for us now. We all know the risks of
nut allergies, so I won’t dwell on that. And these risks increase with age - not just because her independence will increase, but also because teenager’s immune systems are
stronger and more likely to cause a serious reaction. What I will say is that Brodie is an amazingly happy, healthy, kind little girl who we want to do the best for. We want her to
feel confident - to travel, have adventures and live without fear. And so, overwhelmed with this unknown allergy world we found ourselves in, we began researching for “cures”. And this
led us to Professor Fox and OIT.
OIT - Oral Immunotherapy
"Oral immunotherapy, or OIT, helps desensitize patients to the foods they are allergic to by giving them small quantities of the food allergen to ingest every day and gradually
building their body's resistance to the food".
OIT is quite unknown outside of the Allergy Community but it’s been around for a while in countries like the USA and France and the UK is playing catch up.
In a nutshell (lol), children under Professor Fox’s care who were anaphylactic to minute traces of peanuts 2 years ago are now eating 25 peanuts a day without reacting. This means
that they would need to eat at least 26 whole peanuts accidentally in order to have a reaction. That’s a lot of nuts to accidentally ingest! To put this in real terms, on an
aeroplane, for instance, would you rather your child reacts to peanut dust left on the tray from a previous passenger, or have a tolerance which means they don’t react until they
eat 26 whole nuts? It would be truly life changing for her. It would reduce the risk of the worst imaginable thing happening by about 95%. Ultimately, she will still avoid nuts
in public, but this treatment would reduce the chance and ferocity of her reactions and allow her to have a comfortable “buffer” which would mean she can have more independence
and freedom as she gets older.
If we can raise the funds for treatment, under the care of the Allergy London team, Brodie would be given a tiny amount of her allergens - we’ve decided to start with cashew,
pistachio and sesame. If she tolerates this tiny dose, we would drive back home and give her that dose every morning for 2-3 weeks. We’d then return and (again under the care of
the Professor and his team), she’d be given a higher dose and, if all is well, she’d be sent home again. We’d repeat this process until we reach a comfortable level of maintenance.
For some children this is 26 nuts, for some it’s less. There are some risks involved, but having researched this, we are in no doubt that this is absolutely the best thing we can
do for our gorgeous Brodie.
We don't live in fear - we are living our best lives, but we are restricted. Brodie’s chance of travelling to countries like Greece, Dubai or Thailand are limited and we'll
be honest that we are nervous about flying, school trips etc. The younger you complete OIT, the better the results and time isn't on our side as the cut off is age 7
(November 2024!) As allergies are at their most dangerous during the teenage years when the immune system is at its strongest, now really is our best chance to do this!
As we need to go private (the NHS have approved this treatment for peanuts only but the rollout is slow so it’s going to take many years) and we have a good few allergy
foods to tackle, obviously there is a big cost associated with this. The fees are currently around £4000 per allergen, plus frequent trips to London. We considered going abroad,
but we don’t feel that the intense approach to this treatment is best for Brodie - up dosing abroad is usually quite quick and children usually require an IV for quick access
due to the risks involved with an aggressive approach, which we want to avoid at all costs.
How you can help!
We have been saving up for the treatment, but we had an idea which we thought would be a fantastic and creative project for our craft-loving girl and also (hopefully) help us get
to our goal sooner! And so Beads By Brodie was born! By creating her fun and colourful bracelets and accessories, Brodie is so pleased to share her joy and creativity, and we can
also raise funds for the treatment. We’ve decided that we (her mummy and daddy) will pay for all the stock and packaging for her bracelets and then all sale monies will go into
the fund.
Our Instagram is @beadsbybrodie - you’ll see lots of examples of her bracelets. Everything is totally customisable so please let us know what you like and we can create
something you’ll love. UK postage is only £1.50. We accept orders via direct message and payment is via PayPal or bank transfer.
Contact
Please complete the form below and let us know how we can help. We just need your name with a valid email address and a contact telephone number so we can get back to you.