More appointments – more progress? 5

Last week, we had an appointment with the dietician at the Luton and Dunstable hospital. We first met her earlier in the year, in between the blood tests and the skin prick tests. At the time, she said she would have to wait for the results of all the tests before beginning any food challenges with Zac, as she needed to know what was safe. Fair enough. She also said she thought it was worth getting the coeliac gene screen, as first mentioned by Dr Adam Fox. For some reason, unknown to me, even though he had requested it in the letter he sent to the consultant we were seeing at the L&D, the test was not carried out.

As the months rolled by and Zac’s skin infections become more regular, I decided to speak to my GP about it. I wondered if they could organise it, as it had been requested by a specialist, and was not just a case of a paranoid mother wasting their time. You rarely see the same GP twice at my surgery, and there are several I deliberately avoid. This time I did manage to see a new one. She is very young and I have found that the younger ones still seem to have a certain amount of drive and care, whereas the older ones at our surgery, just seem irritated by your very presence.

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Skin infections – our latest challenge 5

Last year Zac had a horrible spot on his elbow that turned into a rash with an erupting abscess at the epicentre. The first GP who saw it said it was nothing. A few days later when it was oozing, another GP decided it did need anti-biotics and the pus needed to be squeezed out. She did it while I held him and it is a memory that still haunts me. The doctor went pale as she did it and both of us went temporarily deaf from the ear piercing screams of my brave little hero.

Ever since then we have always been very vigilant at keeping an eye on any ‘weird’ skin stuff. He did have one other very nasty rash that was diagnosed as eczema but until last week, his skin has been pretty good. But then a week or two ago Zac had a few ‘bad nights’. Lots of fidgeting and getting up in the night, itchy, very sweaty and his tummy seemed very bloated. These were all problems that were part of every day life until we started him on antihistamine twice a day. Because he has been so well I foolishly started to think perhaps he was growing out of his condition and so I became less vigilant with the medicine. I don’t like pumping him full of drugs every day so perhaps was subconsciously challenging him. BIG mistake.

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Nalcrom (sodium cromoglicate) – should we try it? 11

When Zac had his appointment at Great Ormond Street hospital, we were told of a drug that might help him – Nalcrom. The consultant, who I really respect and trust, said he thought it was something we should consider once Zac had got the blood test results. Great.

When we met our NHS consultant, she read his letter with this advice, agreed with it and gave us a prescription on the spot, before the blood tests had even been carried out. Both assured me that this could help his tummy, as it acts a bit like a ‘plaster’ on his gut. As both consultants (correctly) suspected that Zac has non-IgE mediated allergy, medication could be the answer and this is where I came up with my blistered foot analogy.

Because Zac’s tummy has been aggravated for so long, he ‘reacts instantly and allergically’ to many foods now, but he is not technically allergic to any of them. In the way that if you have a blister on your foot – all shoes are going to rub. It is the same for him when he eats. Most days he has a distended abdomen no matter what he eats, and according to the consultants this drug could help with that.

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