The outcome of our latest appointment. 3

Last week, we had our second private consultation with Dr Adam Fox. We first met him almost a year ago, when after years of poor treatment from local GPs and hospitals, I decided we would have to pay for it ourselves, if we were to get Zac in front of a specialist. The first appointment was a success and gave us a greater understanding of what was causing Zac’s various symptoms, but because tests were need Dr Fox wrote to our local hospital and GP and suggested they are managed through the NHS – to save us money, and because they should have accepted him as a patient and run these tests in the first place.
After several NHS appointments and several rounds of blood tests we were pleased that all of Zac tested negative to all of the allergens we had identified as troublesome and this looked like it was confirming Dr Fox’s hunch that Zac has non-IgE mediated allergies, but nonetheless should keep to his restricted diet and take anti-histamine twice daily, with a view to looking at some challenges in the months and years ahead.
Since we met him, and since we saw the NHS specialist Zac’s skin has been our main cause for concern. With several obvious eczema outbreaks, and many skin infections, we decided it was time to see Dr Fox again, as our GP’s could not be convinced that 5 infections in less than two months needed investigating. He has also started having more ‘oral allergy syndrome’ type incidents and a couple of vomiting moments, which had pretty much gone away.
Our appointment with the NHS dietician the week before had left us feeling pretty flat. We waited nearly two hours to see her and within minutes of looking at Zac’s skin she said she thought it was best to see Dr Fox again before changing anything is Zac’s diet, as skin troubles can be massively affected by diet and we needed to make him better and not worse, which food challenges could do. I agreed with her, but was still irritated we had both wasted our time. So when our appointment with Adam Fox came around I decided not to waste a minute and took the liberty of emailing him beforehand. I asked if he would like me to email him the photos of the skin infections and would he like to see copies of the correspondence from the NHS specialist Zac was also under. He responded personally and almost instantly and said he would be happy to look and it would be very helpful. What a contrast to the grumpy GPs at our surgery who are so dismissive and cold.
This time we met him at the Portland Hospital. It was like a 5 star hotel and didn’t even look or feel like a hospital. Extremely comfortable waiting area, welcoming and polite receptionists, lots of lovely toys and the poshest toilets I have seen almost anywhere! Needless to say we were called in dead on time. Dr Fox came out to meet and greet us and led us to his room. It is amazing the difference just a few hundred pounds makes. Very sad and wrong.
I’d emailed him previously, about pretty much all that happened since we had last met and he had the copies of the letters and the photos to hand. He had obviously read them all because he instantly started talking us through all that he suspects was happening. Firstly he started by being very positive and said he could see Zac was doing very well, and was pleased with his height and weight and that his tummy troubles had (until recently) completely settled down – just with the restricted diet. We explained we had not yet started him on the Nalcrom – and he said that was fine, and was only really necessary if Zac was still having tummy troubles whilst on the restricted diet.
So straight away he said, I can see you are in a much better place than when we met, which is true. We then discussed the skin episodes. He explained that it was most likely linked to Zac’s other problems – all of which are probably caused by his atopy – propensity to hypersensitve reactions to a range of allergens, which lead to food issues, eczema, asthma etc etc
He explained that skin has an invisible ‘grease/germ killing’ layer which keeps bugs out – but people with eczema or very dry skin can develop ‘cracks’ in the layer. He said that pretty much all people also have a bacterium on their skin called staphylococcus aureus http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/StaphylococcusAureus/
It can cause disease or infection if it has the opportunity to enter the skin, via the cracked skin caused by eczema, an insect bite or cut or graze. Zac had been, from what he could see from the photos, been suffering from recurrent ‘staph infections’ which had caused his boils and abscesses. http://en.wikipedia.org/wiki/Boil
A couple of the infections seemed to ‘come out of nowhere’ but one was at the site of an insect bite and one was in his finger nail bed, which he does bite from time to time and the skin was definitely ‘open’. I mentioned that he had not had any incidents while on holiday, yet had a fresh one within days of coming home. I said I was surprised as I thought that Zac’s skin would have been very dried out as a result of all the time in swimming pools and the sea. I had also expected his normally sensitive skin to react to the sun tan lotion but it had been fabulous. To look at him you would never know that he had eczema and I asked why. Dr Fox said that if Zac was not on his restricted diet, it would probably look more typically like eczema, e.g. dry, red and scaly, but because his skin is not aggravated by dairy for example, it is not red or inflamed, it is just very dry and not as ‘waterproof’ or bug proof as it should be.
Dr Fox explained that the reason Zac was well on holiday was that the chlorine in the swimming pool would have killed the ‘bugs’ or ‘staph’ on his skin and all the sun tan lotion was making Zac’s normally dry skin very ‘oily’ and so the few bugs that survived the chlorine had no way of getting in because his skin layer was no longer dry and cracked. Made perfect sense to me. So apart from move to a hot country and keep Zac in swimming pool for hours a day (fine by me!), what could we do to prevent more infections? Put something in his bath? Dr Fox told us that if we used Oilatum Plus or Balneum Plus in his bath every day, we should see an improvement. http://www.netdoctor.co.uk/skin-and-hair/medicines/oilatum-plus.html There is an ingredient in it which will improve his skin layer, making it less permeable and there is an anti bacterial agent which will kill the bacteria that is on his skin. It is around £12 a bottle, so he advised us to ask our GP for it on prescription. He said we should use it for 6-8 weeks and if he has no infections in that time, we will know that we have found our solution.
I bought a bottle the next day and we are now using it. I will speak to my GP about it, I hope to speak to the one who saw him with the bad infection just before we went away. She was the only one who had seemed concerned and I hope I can convince her to give us the prescription. £12 is a drop in the ocean compared to what we paid to see Dr Fox again, but if we are to use it for many weeks and months to come, it would help a lot if we didn’t have to pay for it. Really, any one of the GP’s could and should have thought of this. They dish out prescriptions for ‘normal’ Oilatum to parents with kids with eczema all the time. In fact Zac was given it once. It even says on the bottle it has a germ killing effect as well as moisturising the skin. So why, none of them thought to suggest it I will never know. But I am determined to find out. We were at that surgery every few days during the peak of the skin infections and they prescribed bottle after bottle of anti-biotic until eventually it made him sick. Why one earth didn’t they think about what was going on with his skin rather than just throwing drugs down his neck?
We did discuss the vomiting after the anti-biotics with Dr Fox. I mentioned that several times they had prescribed flucloxacillin and it made him gag and heave. He said he was not surprised, as it is absolutely foul in medicine and almost impossible to keep down. I also mentioned the screaming stomach pains and vomiting after his first dose of the double strength erythromycin another GP had prescribed – without mentioning it was twice as strong. Again Dr Fox, was not surprised. He said of all the anti-biotics this is the most notorious for inducing vomiting. He even told us that it is sometimes used, in controlled circumstances, when a doctor needs to make a patient vomit. He told us that there were other much kinder anti-biotics which he would prescribe should Zac have another infection.
If Zac continues to have infections whilst using Oilatum Plus, I should get in touch and he will arrange for some blood tests, as there are several, very rare, conditions that could be causing it (a very weaked immune system or diabetes, were two examples), but he thinks it is very unlikely that he has any of these. He said he thinks Zac is just unfortunate and must be ‘simply covered in staph’ – but he did say the recurrent boils are not that common, so it would be very good practise to test and hopefully, rule things out. I was very reassured. Everything he says, is always backed up with what seems to me, as massive common sense and lots of excellent scientific theory and practise.
Next, we discussed the oral allergy type reactions. As Zac had tested negative for all the things he has been reacting to, he felt confident that these were non-IgE reactions and as they were localised, just itching and stinging mouth, it was not pointing to an anaphylactic reaction. He said it was more likely that Zac was having a reaction to the high levels of histamine in the foods he had put in his mouth – i.e.  tropical fruits, tomatoes. He mentioned that tomatoes were particularly notorious for this. He said that over the years, he had seen so many people having this reaction to tomato, and almost everyone tested negative in the blood tests. So as I suspected, we are just looking at a histamine intolerance type of thing here. Zac is fine with tinned peaches but the skin on nectarines/peaches makes him itch, because the histamine is mostly in the skin, and the sugar syrup that the peaches is in neutralises it a bit. Same for tomatoes he is okay with passata and really well and slow cooked tomatoes in pasta sauces. In passata the skin and seeds are sieved out – and that is where the histamine is. As for my home made pasta sauces, I usually slow cook them and the concentration is lower because the tomatoes are mixed with other things too. A freshly made, only tomato sauce, as per the one he had in Zizzi recently, will have too much histamine for him to handle.
Finally we talked about his gut reactions. Zac has been having normal bowel movements and no vomiting or obvious tummy pains for a very long time. So long as his diet is 100% gluten, wheat and dairy free, he is ok. From time to time he experiences some bloating, but that could be over eating some fruits and vegetables. Dr Fox said as we are in a ‘skin phase’ we need to deal with one thing at a time and should leave his diet as it is until we are confident the skin is back under control. He said you can only and should only try one thing at a time. Again, sounds like ‘good science’to me, so am very happy with that. Anyway, Zac is so used to his diet, that I don’t think I could challenge him even if we had to. It makes sense to leave it until he is much older and starting to get interested in food and trying new things. Dr Fox did mention he would start with a milk challenge but not for a long time yet. The longer we leave it, the more likely he is to have grown out of it, and at least he will be old enough to understand what we are doing and why.
We also briefly discussed the coeliac gene screen. He had written to our NHS specialist and GP and asked them to carry it out. They didn’t. I told him that and he said, it was probably because it is very expensive and they are often loathe to do it!!!! He did say he could do it privately for us, but it would be extremely expensive and at the moment he was pretty certain that this is the least likely cause of Zac’s tummy troubles. But he said it was up to us. We have decided to wait and see. Once they start introducing gluten in his ‘challenges’ in a few months/years, we will soon know anyway. If it is Coeliac disease, he will become very poorly very quickly I imagine. I am dreading the challenging phase, so for now and just thinking about ‘bug killing’ and getting all these nasty ‘staph’ things off my boy’s body!
So all in all very pleasing – the doctor thinks he is doing well, and that the skin trouble can easily be fixed. But it is also quite frustrating. I cannot believe not one of our GPs or the L&D ‘specialist’ considered a bath solution to help his skin. Breathtaking. If it is ‘cured’ by this, I will be so pleased and so mad at them for missing something so simple that could have saved him so much grief and pain. Staph infections can be very dangerous.
So what next? I am just waiting for my letter from Dr Fox. I will make an appointment with our GP and demand the Oilatum Plus. We have an NHS appointment at our local hospital, with a ‘specialist’ at the end of October, so we can report back to her on the success (or not) of the bath solution. And needless to say I am now also gunning for that GP who gave Zac the double dose of the vomit inducing anti-biotic – he will rue the day he crossed me and poisoned my child. 

3 comments

  1. It’s fabulous to hear of your’s and Zac’s progress. As always there are so many of your observations that can help me and others. It is horrible to be able to compare the extreme differences between your appointments on the NHS and the ones with Dr Adam Fox. I am now imagining him with a halo! Seriously, his approach is as you say common sense, scientific, interested and caring. The lack of these factors in some NHS care is appalling and nothing that can be blamed on budget!
    I share your dread of food challenges. It seems ludicrous to challenge yourself or your child when you can see the visible improvement from an exclusion diet. This is especially tough when you know that there is a simple but expensive test that could rule out an illness such as the coeliac gene test. A sure fire way to rile the general public is to tell them to eat something that makes them ill because the test is expensive!
    A always I wish you luck in your next steps. I also thank you again for sharing your experiences so the rest of us can learn too.
    x

  2. Really glad to hear about your appt. It is always good to be listened to and for the person to accept and understand there is a real problem – sadly lacking with so many GPs you see with eczema.
    It also helps when you have an action plan and real things you can try and know what the results will mean. I think that helps to feel hopeful, useful and positive. Good luck with it and let us know how you get on.
    x

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