My oldest son has had eczema for the whole of his life – 10 years. Today’s visit to the doctor has prompted me to write this blog as I feel the need to offload a little about how frustrated I am and how much of a failure I feel for not being able to save him from the pain, discomfort, embarrassment and distress he has to endure.
I include the word embarrassment in that list because unfortunately he does have children ask him if it is ‘catching’ and often gets comments about his appearance if his skin is particularly bad. When he tells me about these things I have to be very grown up and not ask for the child’s name so that I can pop round and ‘educate’ them a little…
I first noticed it after bathing him in the gorgeous smelling baby bath time products that I had so coveted during my pregnancy. I so longed to bath my baby in those heavenly scented bubbles, then oil him and talc him! Sadly after a dip in the good stuff his skin was rough and red – where was my ‘smooth as a baby’s bum’ baby? I know it is incredibly selfish but I have to admit I felt a bit cheated!
I saw several health visitors for routine checks and they all said it was just infantile eczema and that he would grow out of it.
I have seen countless GPs, dermatologists and have had a private appointment with a paediatric allergy specialist. Everyone seems to try and treat his symptoms without trying to work out what the triggers are. It seems crazy to me to keep throwing medicine at him when if we could eliminate at least some of the triggers then surely he wouldn’t have the symptoms in the first place?
Where we’ve seen an immediate reaction we then try to avoid those things in the future. For example: ketchup; juice; apples; cut grass; dogs; sweets; bath products; soap; baked beans etc etc
Extra frustratingly, my sons father (who no longer lives with us) has a very cavalier attitude to the eczema and often tells my son that ‘mummy makes it worse by not letting you have things’ and, my personal favourite, ‘you’ll grow out of it when you are 7’. My son believed him. He was devastated after his 7th birthday when it didn’t go.
We saw the paediatric allergy specialist using private health care and he said the cause was Oral Allergy Syndrome and gave us a huge list of things which ‘could’ trigger the flare ups. But he stressed that not all of the things would. I asked if my son could have allergy tests (this was a private consultation after all so not bound but NHS financial limits) but he said it was impossible to just test for random things. For example if my son eats an apple, he has an immediate flare up and sometimes his lips even blister, so the doctor said he could test for allergy to apples as that was a specific thing…. Forgive me for questioning a man who has had many, many years of studying, training and experience – but what is the point in that?
You aren’t meant to use steroid creams for longer than 7 days at a time. I have said to every doctor I’ve seen that he uses steroid creams EVERYDAY. They all take one look at him and say ‘but how bad would he be if you didn’t?’
So, after today’s visit to the GP (who is lovely, and very understanding) we have hydrocortisone for his face, a stronger hydrocortisone for his body, a new emollient for everywhere, a different bath oil, a peak flow meter, eye drops, a nasal spray, antihistamine and lung stabilising tablets.
We are starting the new regime and hope that this time, this combination will be the one that works for him.