Hello, I’m Emma. I live in a beautiful part of the UK with my husband and son. When my son was 4 weeks old his cradle cap turned to eczema. A few months later our journey with allergies began. These two sentences make things sound almost trivial, but to anyone reading who has experienced these, you will understand how traumatic both eczema and IgE mediated / non IgE mediated allergies can be for all involved. I did what most parents do, and tried to empower myself by understanding this conditions and arm myself with knowledge to help my child.
Today we are undergoing a course of tree nut immunotherapy in the UK and I am in a place where I want to share parts of our journey and discoveries to help other parents navigate their allergy and/or eczema journey. It has long been something that overwhelmed me, and I still feel like that on some days, but I also know that there are glimmers every day if you look for them. I suspect that other treatments will follow but I hope that we can empower each other to live well and not be restricted by this lifestyle we have found ourselves living.
Back to the start
I have to admit that things do get blurry, as the early days with a baby are incredibly sleep deprived. However we had an awful lot of night wakings (every 20 minutes to 2 hours), a lot of crying, wriggling around in pain, and poor nappies. As time worse on the skin on his face started to break down and weep clear fluid. It was red, dry, and his was covered top to toe in a rash. We had a tongue tie treated (as this can mimic allergy signs) but still symptoms persisted. We were given various creams by the GP, then we had episodes of conjunctivitis and swollen eyes. Something was not right.
Moving forward
I changed washing powder, clothing, stopped wearing perfumes and changed all my body washes/shampoos for hypoallergenic ones, hoovered more, tried different creams- I tried everything I could but my gut knew we needed to look at foods. At a routine nurse visit, we were seen by an on duty doctor due to the extent of the skin barrier breaking down, and things began to progress more from there. We were given Nutramigen formula which has dairy in but broken down, but still the reactions persisted, so an amino acid formula was prescribed. By this point I had removed all dairy from my diet so I opted to keep feeding, and try to figure out if more foods were involved. Now I wouldn’t suggest an elimination diet, but at the time I eliminated dairy, soya, wheat, rye, barley, oats, coconut, egg, beef, all nuts, peanut, some oils, chocolate (caffeine) and a few other things. I lost the baby weight very quickly but also got to the verge of struggling to function.
Referrals and Allergy Tests
We were very lucky to have an excellent GP surgery, and they referred us, but as the chaos from the pandemic was still in full swing the waiting lists were astronomical so we bit the bullet and had a private consult with a paediatric allergist who was able to confirm a cows milk allergy and this was added formally to my son’s health record.
The slippery slope of allergies
I wish that diagnosis was where this tale ended, but sadly we have become seasoned visitors to our local NHS allergy clinic and Dermatology clinic. Allergy referred us to dermatology and it has been an integrated approach to manage these conditions. We had direct reactions (hives, swelling, gastric etc) when weaning to lots of foods including wheat, soya, egg, nuts, oats, peanut and more. Some of the more sensitive ones reacted purely on contact or from traces on my hands. We have thankfully outgrown a few, but we’re now left hoping that we outgrow some of the more common ones and seeking pioneering immunotherapy at the only treatment centre in the UK. It isn’t cheap, but it might afford a better quality of life if it works and we are able to sustain the daily routines.
And what about the skin?
We have a big regime of daily skincare involving emollients, creams, immunosuppressants and steroids of varying potency. We have to carefully prepare for any messy play, and cover up in certain weather conditions. Night times involve careful baths and special garments. Eczema is a very unforgiving companion and it’s very traumatic to see him in pain and not know what to do, but it does seem to be improving. We thing this may be allergy driven and environmental but again we hope to outgrow this. Time will tell. Sadly a lot of eczema sufferers also suffer from a house dust mite allergy, and this is incredibly difficult to irradicate.
And to the future
This is a way of life for us. Carefully risk managing but not passing the stresses and worries on to my son. Every party, every meal, every trip out, managing a stock of medications and ensuring we don’t run out, keeping a full diary of hospital visits. It’s very intense at times, but he is a wonderful child and has so much going for him. We just hope that each day the world becomes a little more educated and aware of these conditions and how include all children regardless of what we write on the medical forms.
I’m here to share some of our tips, discoveries and thoughts as we navigate this journey- feel free to email me or follow me on instagram @allergyalchemy if you want to keep up to date. Better still, subscribe to my email newsletter so you don’t miss a post, discount or bit of news from the community (I don’t have the time to email very often so I promise not to spam you!). I also have a little shop for various allergy/eczema inclusive items and forms- check out the tab for more information. Or if you want to support us in another way then feel free to ‘Buy me a virtual coffee’ here to keep me company on our many clinic/hospital visits. (Note this links to Emma’s Alchemy which is my shop name- its just easiser than having two accounts)
Disclaimer: I am not a medical professional, nor do I claim to be. What I share here is from a personal experience. What works for us may not work or be suitable for all, but I hope it may give a starting point for any reader to do their own research. Although this website is free to read, I may make a small bit of commission from affiliate links, sales or adverts, at no extra cost to you. My opinions are not swayed by this.