It struck me whilst recording our latest Allergy Today Podcast with Clare Hussein (AllergyMumof1), that her experience with her daughter’s eczema and allergies was remarkably similar to my own. Once she managed to get taken seriously she did finally get to see an allergy specialist but this took years of fighting. This final stage is the only difference, because it took me years, as I think my dairy allergy was initially non IgE mediated. I didn’t get tested and a proper referral into well into my twenties after the allergy clinic in my county discharged me because I was now an adult… go figure.
This is shocking, since our experience, back in the 70s wasn’t great. I’m 46 now and baby Hussein is now 10 years old. Why has so little changed?
1973 – Baby Whatallergy is born (Me! Little Ruth)
Baby has eczema from pretty early on.
Mum is told, baby just has eczema. There are no photos of when my eczema was really bad.
Egg allergy presents on weaning – Mum just avoids giving baby egg.
Later peanut allergy at about six years old. Projectile vomiting.
Mum told to avoid giving baby any nuts.
In late teens, young adult Ruth begins to have more severe allergic reactions to nuts.
Also cuts out dairy. Eczema heals but child already hooked on steroids.
Discharged from Dermatology/Allergy clinic.
25-30+ very severe anaphylactic reactions to dairy begin.
Finally gets referral to Oxford Allergy Clinic.
40+ Soya allergy arrives.
And the allergic march continues…
Topical steroid withdrawal begins in January 2019 with minimal medical supervision or support. Medical support consists, of regular checkups to badger patient into taking steroids and Protopic again.
10 years ago. Baby Hussein is born.
Baby has severe eczema from pretty early on.
Mum is told, baby just has eczema.
Baby has anaphylactic reactions when weaning to various foods.
Mum struggles to get any tests done.
Blood tests reveal allergies. Mum told to avoid giving baby these foods.
Mum fights for months to be seen by a specialist and eventually, over six months later, finally gets the proper referral to an allergy clinic.
Listen now the Allergy Today Podcast
This shouldn’t be happening. There are NICE guidelines for flagging babies with eczema for allergy testing to avoid these triggers as the potential cause.
Why do doctors continue to send mums home with babies who are clearly in distress with serious eczema?
Living with eczema as an adult is difficult, stressful and depressing.
Imagine how confusing it must be for a little girl. A child who should not spend the first two years of her little life in pain. Who should not now be living with anxiety and a fear of needles, meaning the allergy tests themselves are a struggle to get done.
Childhood should be a joyous experience, filled with adventures, fun, learning and nurturing. When a mother can do nothing to soothe and help her child, it’s heartbreaking.
We are letting our children down. And it wouldn’t take more resources. Just better signposting and if resources are stretched, advice on safe and reliable sources of information that mums can access.
Instead there is this gaping void. This disappointing chasm of nothing.
No advice. Not even helpful resources or support group recommendations.
Nothing.
Nothing has changed.
The one thing that has changed and shines a beacon of light on this whole sorry situation is social media. Despite all its downfalls, it brings us all together and helps so many people find support, guidance and reassurance.
What has your experience been? I’d love to hear, the good, the bad and the ugly…
So I met with our dermatology nurses on Monday.
The problem, they say, is that all families think their child’s eczema is “caused” by allergies! They only have 15 minutes to talk about the eczema and how to manage it, they don’t feel they can start trying to get a dietary history, which is reasonable.
So we have agreed the following –
All children coming to dermatology with eczema get an information leaflet (that I’ve drafted) about eczema and allergies. In it, it says that if there any immediate, consistent reactions to a food they should ask their GP for an antihistamine and a referral to allergy clinic, and get allergy advice from Allergy UK, If it is a young baby with moderately severe eczema (eg needing Eumovate or similar potency topical steroid) they should all get referred to allergy clinic (as per NICE guidance). It also talks about house dust mite and pet allergies.
Hope this helps smooth the pathway for our patients. Will also suggest to our Allergy Network (CYANS) here in Scotland that it is used nationally.
Adrian this is brilliant. I thought I’d replied but can’t see it now. Can we roll this out across the country? And yes I totally agree, in the absence of enough time for detailed consultations we have to refer families to trusted sources of information and support. Thanks for all you’re doing for our community.