In 2014, as we eagerly anticipated our much longed for baby, we were regularly offered the advice that ‘nothing quite prepares you for parenthood’. Never a truer word said of parents of children plagued with the trio of eczema, asthma and allergies.
In April 2014 we welcomed our son Steven. He had breathing issues from birth and developed eczema and allergies soon after.
My mothering instinct told me that his breathing/vomiting/top-to-toe red flaky skin weren’t normal of a new-born however I was reassured that all was fine by the hospital and Health Visitor. Our GP described it as slightly dry skin and to use Vaseline. Meanwhile I was hoovering the car twice a day because it resembled a snow storm and my new born wriggled so much to scratch himself that he managed to roll from 5 days old to relief the itch on his back!
After countless GP appointments and researching online I had to really advocate for my son and push for prescription milk. Eventually this started to help with the reflux and his skin improved slightly. He was then diagnosed with laryngomalacia, eczema, reflux, tongue tie and CMPA. We were given numerous types of creams, most of which made his skin worse and the only thing that seemed to help was a mild steroid.
We eventually had a referral to Dermatology where Steven was wet wrapped in bandages. We went to Dermatology for wet wrapping for 2 weeks: driving to the hospital, no parking, trying to fit in feeds, constant crying and the strongest baby known to man. When the nurse instructed me to carry on doing ichthopaste myself at home I burst into tears. How could I do this alone (my husband works till late and is often away) with a wriggly child with this brown muck that stains everything? The wrapping helped but after a week his skin reverted back to what it was originally.
I felt like all my maternity leave was spent in hospitals with Steven for eczema, asthma, allergy appointments, acute admissions, surgeries for scopes, diagnostic testing for feeding issues, and the regular back and forth to the GP for prescriptions. It really got me down. Why was my baby suffering and nobody else’s was? Other children seemed to have a little bit of eczema behind the knees but not head to toe. Even now I feel like I am the only person in my peer group who has a child with such extreme allergies/eczema. I can’t ever see him growing out of any of it, especially the allergies because the list just keeps growing.
Eczema has alienated Steven, and us as a family, from a whole host of activities and experiences. On many occasions we have had to turn down birthday parties because the activities are things he can’t do e.g. slime making, messy play, sand, pottery, swimming etc.
I was desperate to find something that helped and at one point I decided to try the Dr Aron regime (a private Dermatologist with his own approach to treating eczema). It did really help but after a year our GP and Dermatologist were nervous about the continued use of antibiotics so we went back to steroid and emollients.
Steven has to wear scratch suits/skinnies day and night as he scratches himself constantly. He has to wear gloves at nursery inside and outside as any dirt that gets into his cracked hands gets infected.
We have just recently been patch tested and it has revealed that he has an allergy to the tanning chemicals in leather, so he can’t wear leather shoes (we have a leather sofa and I do like my leather handbags!). Finding this out has made a massive difference because his feet were one of his worst areas. I really wish this testing could have been done earlier as this would have saved a lot of pain. At times he hasn’t been able to get shoes on and the pain has been unbearable for him.
Steven has had so many admissions to hospital over the last 18 months for his skin. He has had herpeticum, infected eczema and Gianotti Crosti syndrome (GCS) which have been horrendous. On top of this his routine appointments are endless.
I am feeling very overwhelmed and it is just awful to say but waiting for the next hospital admission/A&E/GP for eczema, allergies or asthma. I can cope with the regular planned ones but when sickness occurs, everything in the family routine is thrown out. The impact is huge on our family.
Only recently did I apply for DLA for Steven and he was awarded the middle rate. When I totalled up everything that we spend on special food (nothing prescribed), gloves, electricity for separate washing, parking costs for appointments, petrol, missed weeks from private nursery/days off work due to appointments/bad skin, holiday insurance five times the normal amount etc. the DLA will really help. Nothing is begrudged but it really does add up and I only wish I had applied sooner. My husband and I have spoken about me giving up work, it would be tough financially but it might be what we have to do as there are only so many times in a month that an employer can be sympathetic to our family’s needs, despite taking holidays.
In 2018 we welcomed our daughter, a sister for Steven. She has no asthma, allergies, or ECZEMA! She feels such an easy baby and I now realise this is what all the other parents get to enjoy and experience. I definitely feel like I was robbed of this with Steven. Despite her having no medical issues she has had to come second in line to Steven from day one. For example when they have a bath she is out and into bed first so I can tend to Steven and she has been left unhappy and unsettled until I do the creams, steroids, bandaging etc.
About 2 years ago, I stumbled across a leaflet in the Dermatology waiting room for Eczema Outreach Support and I have never looked back. The support and caring compassionate people helping families like ours has made a huge difference, we are all so thankful for the superb work. Especially Jean, what a gem of a girl!
“Other children seemed to have a little bit of eczema behind the knees but not head to toe. I can’t ever see him growing out of any of it, especially the allergies because the list just keeps growing.”