Part 1, the early years.
This is the story of our daughters long journey through severe eczema and the battlefield of consultants, hospital admissions, alternative therapies, failed treatments, TSW and days of total despair.and then finally, the happy ending when we found the Dr that literally saved our girls skin….
I’m writing so I can give hope to other parents who are struggling to get control of their child’s eczema, and who may think, as we did, that the only option is stopping all topical steroid medication, otherwise known as TSW, or Topical Steroid Withdrawal. Thankfully we now know that there is another way out of the nightmare that is unresponsive and worsening eczema, but more on that later.
So, our little Dot of a girl was born in the spring of 2001.Tiny,beautiful and peachy skinned. I already had 2 sons who were then 14 and 16. The youngest had had eczema as a baby but outgrew it by the time he started school. When she was a couple of months old, our little Dot had an allergic reaction to a well known babyo be honest shampoo. The whole of her neck and chin looked scalded. So it was off to the gp and her first prescription of Hydrocortisone was written..her reaction to the shampoo was the first sign that she had sensitive skin, soon to be followed by the eczema that had plagued her dad’s childhood.
To be honest the first few years were a bit of a blur. In the next 3 years we had 2 more daughters, both of them developed eczema early on too, so those early years were hard going to say the least..however the eczema was mainly manageable, it was difficult at times,especially when all 3 of the girls needed wet wrapping, but we got by ok.
However, as they got older the 2 youngest girls skin did improve but our little Dot’s remained quite stubborn. When she was 4 she was admitted to our local hospital with infected eczema, she was covered but the worst areas were her legs and the itch was unbearable. She was in a week with very little improvement when they diagnosed Eczema Herpeticum,a viral infection which can be dangerous with severe eczema so she was transferred to another hospital an hour away which had a specialised dermatology dept..She was kept in isolation and after intensive steroid therapy and wet wrapping was discharged with a prescription of potent topical steroids and amazing looking skin.Unfortunately with weeks of being home and once the topical steroids were reduced her skin took the downward slide that we were to see time after time throughout the following years…From age 4 through to 8 yrs her skin cycled with flares and periods of relative calm,never really being clear,the flare days far outweighed the calm ones but she coped really well and got on with her life,and despite some days being really sore she never complained and rarely had time off school. She was a happy,healthy little live wire. That was soon to change…..