This week I have been looking back at the long journey we have made from diagnosis, the support we received along the way and to what is available now to parents and carers of those children with eczema.
I remember that day when we were sitting in the GPs surgery, a new mum and her baby of only two months awaiting his very first injection. We had to wait a while and of course he got hungry and fractious just as our name was called, the GP was brilliant and calmed us both down ready for that little jab. I looked away (as you do) he yelled and then suddenly he came out in a huge rash.
The GP was unsure what it was but assumed it was just a reaction to being hungry, tired and having a needle pricked in him, almost a nervous reaction!
But the rash didn’t go away and after another visit to the GP, eczema was diagnosed. I cannot begin to tell you how supportive and brilliant our surgery is. Nothing was too much trouble, from our tearful ramblings to researching the best treatments. We became a fixture in the waiting room and tried every avenue to see what could be done.
Allergy to milk was suggested – so we tried this route. It made no difference. so we tried allergy testing, which is very difficult in a small baby. Nothing particular came up at this point.
We tried homeopathy and after a lengthy first discussion a formula was arrived at. We tried it and its difficult to say if it worked or not, because quite honestly we wanted an immediate remedy and of course homeopathy doesn’t work like that, so we abandoned that idea. Rightly or wrongly.
So began our first local hospital visits, so many tubes of creams, tubs of moisturiser, bath emollients, wet wrapping where do you begin. But some things worked for a while to give us all some relief, then it got infected and we were back to square one again.
I think everyone is very unsure when the words steroid creams are mentioned with the effects that this can have in the future on the skin but there is little choice, so again, we went along this route.
Eventually our GP suggested we see a consultant at Great Ormond Street Hospital. We really felt things were moving in the right direction and the support from everyone was fantastic.
Some treatments were changed, others remained in place such as bath emollients but it was the reassurance that was so great because this was so important after several years of this constant battle for a healthier skin.
At one point he was admitted for several days so that the skin could be monitored with a series of constant wet wrapping to moisturise and clear the skin. The results were ok but not as good as could have been expected.
However, the skin is now better with less eruptions but still monitored every six months by GOSH. It has been a constant struggle for all of us but we get through it.
When I look at the support we received from our GP surgery (fantastic from all the GPs we ever saw). The local hospital (we were one of many) GOSH (so supportive) family and friends (brilliant) local support groups (never found anything) and I know not everyone is so lucky.
However, I have found Eczema Society with all the information they give, Nottingham Eczema Support for their help and friendliness, Talkhealth for their wealth of information and this is just there for you at the touch of a button or a phone call. I know there are loads of support groups throughout the country to enable you to realise you are not alone and that someone else has similar concerns. That reassurance when things get you down are vital so don’t be afraid of asking for some help, we all need it!
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