It has been a very long time since I last blogged. So much has happened. Zac has had a lot of appointments and we have finally got through the skin episode – which turned out to be much more than just a skin episode. As I said, he got through it but not without a lot of stress, some scarring and what I think can only be attributed to divine intervention. I have found this post very hard to write and it has somehow stopped me from being able to write anything else. I felt I needed to get this one done before I could return to the food writing, because it is so important and dominated almost a year and a half of our lives but whenever I think about it, I cannot clear my head because it could so easily have been a very different outcome and it still frightens me.
I had blogged several times about the worrying boils and infections and what we had been told was infected eczema. We had seen many doctors but nothing seemed to work, for long, and we could not establish what was causing these problems. We were just treating the boils but not having any success in preventing them. Tom had also had a few similar incidents, and we were now worried that Zac had passed a ‘bug’ to Tom or perhaps Zac had ‘inherited’ it from Tom.
It all started back in 2012. The first one just seemed to be bad luck and one of our GP’s even said that. Several infections later I was beginning to wonder if it was connected to his gut issues or was pointing towards a problem with his immune system. ‘Dairy free’ kids are more prone to skin ‘trouble’, so I hoped it was just that. I asked my GPs. I had to remind them of his food reactions and asked if it could be connected. Zac was often scratching. Something was making him itch. One of the GP’s said it could be a ‘type’ of eczema. I couldn’t see any. I was told it is not always visible – but I should try to stop him scratching as he was probably causing his skin to become infected. Zac’s skin was always dry but not really irritated and didn’t have the ‘typical’ red, sore appearance of ‘normal’ eczema. Dry skin means the ‘barrier’ of a bit of grease is missing and so the skin is more permeable.
After several nasty infections, I raised the issue at a private appointment with Dr Adam Fox. This earlier blog post fills you in on why we went and features some photos of Zac’s skin during his infections.Looking at them again makes me feel very sad as the pain he must have felt can’t be imagined.
And this post fills you in on our discussion with Dr Fox.
After this meeting we had another more positive appointment with our local NHS hospital. We had been given a new doctor and she was taking a good deal of interest in Zac and ordered some blood tests. She agreed with Dr Fox that recurrent boils could be a sign of an immunity issue, possibly even diabetes but most likely the unfortunate combination of his dry skin and a colonisation of ‘staphs’
She ordered more blood tests, including re-running his allergy tests. The results of the allergy tests were all negative, which was good news. The other results were less satisfactory. One of his ‘scores’ had come back high. His ESR count was raised. She was not overly alarmed, but when we met her at our next appointment she said she would like to test it again. She said it usually indicates some kind of infection or inflammation. Zac was not showing any particular symptoms, like a fever or pain, so we were just told to keep an eye on him and we would re-test and review in another six months.
We continued with the bath treatment – Oilatum Plus, and skin cleanser – Dermol. Both did their job for a while but then he started to suffer with the infections again and seemed quite unwell. He would often complain of back ache. On several occasions he came over very hot, sweaty and pale after a period of exercise or energetic play. He would thrash around in bed a lot and often wanted to be naked. I assumed his clothes were irritating him and making him hot.
I spoke to Adam Fox over email and he suggested we get Zac tested for diabetes and to have his immune levels checked. I managed to get our appointment at our local hospital rushed through. Before that appointment was booked Zac had his biggest boil ever and was quite poorly with it. It went from being a couple of little white heads one day to Mount Vesuvius the next. See below.
I called our GP and was granted an emergency appointment with a locum. By the time we saw her the boil had started to ooze. I told her the full story and she asked if anyone had ever taken a swab of the pus before. I said no, she looked shocked, put on gloves (!) and very carefully took a sample. As you can see there is a black scab just beneath the open wound. That is where he’d had one just a couple of weeks before. It had been similar at its worst and yet no-one thought to swab it then. Zac was so brave as she approached him. Once the boils had ‘burst’ he never used to feel much pain, it was always worse just before the ‘eruption’. I guess the ‘skin’ was dead and I don’t suppose there were any nerve endings left in the wound.
The GP said she planned to prescribe flucloxacillin. I told her he couldn’t keep it down. The taste is foul. I tried it once myself to see if Zac was over-reacting. It was like how I imagine warm bleach, washing up liquid and black pepper might taste. No wonder he gagged the minute it hit the back of his throat.
She then tried to give us erythromycin, I mentioned that it had made him very sick and Dr Fox had advised us to avoid it and try augmentin instead. She was dubious but I insisted. She said the other two would be far more effective at treating this kind of infection. I said they would have no effect unless I could get him to swallow them, which I knew I couldn’t. So she dressed his wound and sent us home with the medicine I requested.
Two days later I received a phone call at work from my husband. He said the clinic had called with the results and ‘they said something about it being something staph…’ and we need to call them back. I remembered that Adam Fox had said it was likely to be that, so was not too alarmed. I couldn’t get through on the phone and decided to call the next day. When I got home there was a letter waiting. It was from Bedford Hospital lab and confirmed that there was a ‘profuse colonisation of methicillin resistant staphylococcus aureus’. When I saw those words, I realised it was not just a ‘staph’ infection but MRSA – one of the most notorious ‘superbugs’ and potentially deadly. I nearly fainted. The non-medical translation means that it is a bacteria that most anti-biotics cannot kill. It listed the ones it was resistant to – flucloxacillin and erythromycin. Then I started to cry.
How many times had I battled to get that medicine in him? He was a little boy with a history of ‘gut issues’ and yet our GP’s just threw anti-biotics at him without thinking about the consequences. I will never know if they did work at first and he just became resistant to them because of overuse or if he was always resistant to them and not one drop of them had done anything to help him. Were they the reason he had so many gut issues and a distended abdomen? Was the bacteria in his system the reason behind his unwell moments? I will never know for sure. All I know is that somehow despite the horrendous damage they did to his beautiful skin and the pain he must have suffered, somehow every time he got an infection his body knew what to do and he always got better. How many more times could he take it? So I did call the GP the minute I got this information and I also called our hospital. They were all aware and were for once taking it very seriously.
We were told that Sophia, Tom and I would also have to be swabbed. As we suspected Tom’s came back positive too. He’d had three terrible infections himself in the previous 12 months and was also lucky not to have had a much worse outcome. We will never know who gave it to who. Possibly Tom got it from treating Zac’s open wounds. We were both always super careful but this is not called a superbug for no reason!
The treatment was a body wash and nasal spray to be used several times a day. We had to ensure we all used our own towels and washed each one after every use. We all had to change our bed linen every day for the whole week of the treatment, as well as clothes of course. I had to wash everything at a minimum of 90 degrees. I was lucky my washing machine didn’t blow up but it did start me thinking about washing machines. I do clean mine regularly as the soap drawer sometimes gets a bit gunky and then I wondered if that had caused it? I also started thinking about the non-biological detergents etc that we are all told are safer for the skin. Were they not really cleaning our clothes? My Mum always said she didn’t believe you could get any clothes clean at 30 degrees – and now I agree.
I am happy to say that the treatment was a success, We were all swabbed again after one week and we were all clear. Neither of them has had any more infections and I am very happy to report that Zac’s ESR count has now returned to a normal level. So I think it is pretty safe to assume that we can attribute this to the MRSA. However, I am bit tired of assumptions. That is all I have. That is all the doctors have ever done. They all just assumed it was ‘unlucky’ or ‘just one of those things’ – their words not mine(!) – or because of his allergies and intolerances – but it wasn’t, it was MRSA and it could have killed him – and Tom.
So what now? We remain vigilant. We still use Oilatum Plus from time to time. We still use Dermol if his skin seems a bit dry or irritated. I wash everything at a minimum of 60 degrees and all bedding and towels at 90 degrees. I regularly superclean my washing machine and often wonder if it was all my fault. Was I not doing a good job of keeping his environment safe? Or was I being too safe? You hear much debate about superbugs being the product of our over sanitised, anti-bac crazed modern lifestyles.
One interesting observation is that Zac is no longer itchy. Yesterday I was archiving some video of the children. I found one of them both playing in the garden one summer. They were both chattering away and without realising it, Zac was scratching his skin like a puppy with fleas. I suddenly remembered just how much he used to do it and realised he doesn’t do it at all any more. We used to put it down to his skin being sensitive. Now I can’t help but wonder if he could ‘feel’ the bacteria that had colonised his skin. Now they are gone he is no longer itchy. Coincidence?
He also used to rub his nose all the time. My husband did too. The bacteria also lives inside your nostrils, hence the nasal spray treatment. One of the specialists we used to see said it was common behaviour in an atopic child – to constant rub and wiggle their nose. Neither of them do it any more. Is it because their nasal passages are now clear of it?
I have no answers. I just know what to do if he ever gets any kind of skin infection again. I also know not to trust my GPs any more and that I have to keep pushing and pushing and always trust my instincts when it comes to the health of my family. I would also urge any of you to do the same. I know a lot of you who read my blog have children with skin issues, so please remember this story. Look at these pictures. If you ever see anything like this on a member of your family show a doctor asap and get it tested. We were so lucky that we had a happy ending and I really want to make sure no-one else goes through what Zac went through or worse. One of these infections is bad enough and can be deadly, Zac had at least ten before we finally got rid of it. He had an angel in his corner. Possibly the same one that got him through swine flu. Fingers crossed she is still with us, because with GP’s like ours we need all the help we can get.