From 2009 Little Dot was having a lot of infected flares. She would be given antibiotics and often oral steroids and things would settle down again but as she was having them so frequently our GP, who was also a skin specialist (we moved to this practice so she could be under him) decided to put Dot on long term antibiotics to see if it would ward off infections. She was on Clarithromycin for about 6 months. It made no difference, she was still getting infections, she would be given different antibiotics and often more oral steroids, but as soon as the course finished the infection would return… on and on it went.
By the summer of 2011 she had had by far her worst year yet. She wasn’t sleeping, she was tired, itchy and miserable and so were we. By the time the summer term ended we were all exhausted but little Dot more than ever. For the whole 6 and a half weeks school holidays she did nothing, she had no energy, she would lay on the sofa all day while her sisters played out. If she tried to join in it would completely wipe her out and she would crawl back to the sofa…
We went back and forth to our GP all summer, we were worried sick that there was something wrong with her, only to be told that we should expect her to be unwell due to the severity of her eczema. But she has had eczema all her life and had always been a healthy girl, it just didn’t add up. I remember speaking to our GP on the phone in tears one day and asked him what he would do if it was one of his children, he just said “I’d go to the chemist and get her a multi vitamin”! I hung the phone up in despair that no-one was taking us seriously. Eventually, I’m sure to humour us, they agreed to do some blood tests, an ordeal in itself as our Dot has a massive fear of needles and has to be restrained to get blood from her, totally wrong but it was the only way to get the tests done.
Basic blood tests were carried out which all came back within the normal range. A few weeks into the summer holidays her lymph nodes all over her body became enlarged, one in her groin was the size of an egg, back to the GP who said it was due to her eczema, however when she was seen at the dermatology clinic a few weeks later they were alarmed at the size and number of the nodes and had her admitted to the children’s ward for further tests. By now she was having sudden heavy sweats as well as shivering and cold. They were concerned enough to do a lymph node biopsy as her symptoms were similar to what a person with lymphoma would have… After an agonising 4 week wait for the results we were told all was normal.
By the end of the summer break she was worse than ever, she had so little energy she could hardly stand, she’d lost weight and the sweats were coming more often, her skin was still a huge problem despite still using potent topical steroids daily.
She went back to school in September in a sorry state. By this time she had been referred to the dermatology clinic at Salford Royal Hospital in Manchester. The Consultant there seemed really nice, we saw him quite a few times and tried a handful of different steroid creams, but as her eczema wasn’t responding or ‘switching off’ he decided to put her on the immune suppressant Azathioprine, he explained about the possible side effects but said it would give her a better quality of life, improve her skin and eventually enable her to get off the topical steroids that she had now been on for several years on and off. We were all excited, and when we picked up the prescription from the chemist we were singing on the way back to the car. At last she was going to be free of this horrible disease that was robbing her of her childhood.
How disappointed we all were when weeks later there was no improvement, if anything she was worse, I was gutted for her. So continued the infections, the antibiotics, the steroids, and still she was just about managing to get through her days at school. I spent my days and nights searching the internet for answers. We spent hundreds of pounds travelling miles to see a homeopath that came highly recommended, again Dot and we thought this was to be ‘it’. It was a complete waste of time and money and yet another disappointment for our girl.
We did the York Test, where they test a drop of blood for food sensitivities and paid a clinical nutritionalist who gave us a food plan and told her she would get better if we stuck to it, all it did was make her miserable and trippled our food bill and needless to say it made no difference. We paid £350 to see a private paediatrician who specialised in the adrenals as another GP thought her symptoms suggested adrenal suppression which could have been caused by the years of steroid use, again all came back normal.
By now Our Dot was having more and more days off school, she was in year 6 and they were working towards their SATS so she was anxious about having time off, so most days she would try to get her there despite the state she was in. Her teacher was wonderful with her, she would cream her when needed and settle her down when she was itchy or sweaty, she would try to get her through the days the best she could, and when Dot couldn’t manage any more, her lovely teacher would ring me to collect her. Sometimes she would last all morning and some days only an hour or so but every day she tried. The worst days were when she had the sweats, they would come from nowhere and last for anything from a few minutes to several hours… so distressing for her, but she tried really hard every day to keep going.
Christmas came and went and nothing changed, all we ever talked about was what could be wrong with our girl… our lives revolved around skin… Itching, bleeding, peeling, weeping, sore skin! Sleepless nights were followed by bloodied sheets. Constant creaming, laundry washing, skin everywhere… they were itchy, tearful and desperate days with no sign of an end to it…
One day, when I was on the train journey home from a dermatology clinic, I saw a post on one of the eczema support groups and was led to ITSAN, and so the next stage of our nightmare began…