New Year – new doctors, new hope and new adventures. 5

Happy New Year to you all. I hope you all had a good Christmas and have seen January off to a good start. I am happy to report that we had a very good end to the year and positive start to 2014.

My intolerant child, Zac, has been mostly very well and we have had some positive meetings with some very genuine doctors and are making progress in all areas. Towards the end of last year we visited Dr Adam Fox again, as Zac had been having recurrent skin infections. To cut a long story short, the advice we were given – to use Oilatum Plus in the bath every day – proved to be the answer. Zac has not had any boils or abscesses since the day we started it. Worth a try for anyone with problematic skin – but probably best to check with a GP first!

Even better news is that we have found a GP at our local surgery who seems to have taken an interest in Zac’s case and has been fighting our corner. We first met her when Zac was sick from all the antibiotics another GP had given him because of the skin infections. I was impressed by her apparent concern and practical advice so have now made a point of seeing only her whenever we need a GP. We went back to her a few months ago when Zac was having a few weeks of unsettled bowel movements and a bit of an eczema outbreak. She prescribed a new cream for the spots on his face (Dermol) and was more than happy to give us the Oilatum Plus on prescription.

We also told her how the NHS hospital had moved our next appointment to May 2014 when Zac was too ill to attend the clinic a few weeks before. She said she would chase them. She must have kept her promise because within a matter of days a new appointment came through for the end of November.

Our usual consultant was on maternity leave, so I was anxious that we would have to start all over again with someone not familiar with or interested in our case. I was wrong. The new doctor showed great concern as I updated her on all that happened through the summer with skin infections, oral allergy type reactions and a recent spate of tummy upsets and eczema outbreaks.

She decided everything should be tested again – just like that! With previous doctors I had begged for years, and even gone to the national press yet this lady just decided that this was of course the most sensible thing to do and soon. It was coming up for a year since Zac first had his blood tests for allergy to milk, wheat, various fruits and other allergens etc etc. She had obviously read his notes, before we met, and said that even though they had all come back negative things can change and because of his more regular and severe reactions this year, it would be a very good idea to check it all out again. I guess that is the ‘allergic march’ I have been reading about. Some say you grow out of these things, but others just grow into them!

She even went as far as to say she wanted blood tests, followed by skin prick tests and then would like him to be ‘challenged’ on a ward, in a controlled environment, orally with the foods we suspected had caused the itchy mouth/swollen tongue and very sudden reactions this summer. She says we need to consider an epipen training because he could be developing full blown allergies and he could go from being non IgE to fully IgE with an anaphylactic response and it is always better to be prepared. I could have kissed her at that point. No-one is happy to hear that their child might be developing these kind of conditions, but you do feel very happy when someone decides to do something about it and train you to use something which is a literal lifesaver.

We have several friends who themselves have or their children have anaphylactic reactions to certain foods and whenever I tell them about the episode on holiday where Zac said his tongue felt ‘big’ after one lick of a mango ice lolly, and all of the other complaints of food being ‘spicy’ or ‘itchy’ they all beg me to demand an epipen – just in case.

So the blood tests were taken just before Christmas. No results yet. Still waiting for the skin prick tests, probably likely to take place in February and who knows when the ‘oral challenge’ will take place, but at least we are in the system and we have a doctor who wants to get some results and work with us. She said his recent skin and tummy troubles are most likely being caused by a food – as opposed to another condition, and for now we just need to keep him on his restricted diet, keep reading those food labels and not to bother challenging him with anything until we have some results. She also advised us to keep the Piriton to hand at all times and increase his daily dose of Benadryl for kids.

It was Dr Fox who first advised us to give Zac a 5ml dose of cetirizine every morning and every evening. Even though the bottle says a child of Zac’s age should just have 2.5ml, we were told that Zac needed more and it was not harmful. When I emailed Fox again, during the middle of the recent tummy troubles, he suggested going up to 7.5ml morning and night and see if it helped. It did. It was reassuring to hear from both doctors, that a boy of his size, with his condition would actually benefit from even going up to 10ml each time and not to be afraid of using Piriton as well if he was having a particularly bad reaction.

So that is what we have been doing and apart from what looked like an allergic looking skin reaction to the numbing cream on the day of the blood tests(!) Zac has been absolutely fine. He was a little out of sorts, hot, itchy, restless and tired in the days running up to the tests – but we had been told to stop his anti-histamine for several days before the tests so as not to depress the results. So I guess Zac is more dependent on his daily dose of drugs than we thought. You can really see the difference in him. We approached Christmas feeling more positive than ever, as by then he was back on the cetirizine, full of bounce and we even managed to persuade him to try some new foods!

He is so nervous about trying new foods, which is understandable and I have been advised not to hassle him about it or make a big deal of it. Must be good advice because just recently he has, without prompting, shown a lot more interest in food and has shown some willingness to try. Needless to say I don’t bother offering him anything from the list of ‘usual suspect allergens’ – but I do keep trying with normal, traditionally ‘safe’ foods – e.g. a roast potato at Christmas, a carrot, a bit of meat. He actually started eating bacon this Christmas and even had a gluten free dairy free sausage wrapped in bacon for his Christmas dinner! Last year he had gf pasta…

His ‘approach’ to trying a new food is curious to anyone seeing it for the first time. He holds a tiny piece of the food in his hand, looks at it, sniffs it, dabs it on his lip and then licks it. To many people that might sound ultra fussy and appear to be the behaviour of a picky eater, yet when I told the doctor at the hospital, she explained to me that he was being very sensible. She said that if he is developing IgE reactions to foods and is aware that some foods make his lips itchy and ‘taste spicy’, he is protecting himself by thoroughly checking them out first.

She said she would advise this approach to anyone with suspected food allergies, as many people have such a heightened sensitivity that some can actually detect the presence of their trigger allergen just by texture, smell or a dab on the lip. To dab it on the lip and then have an itchy response is obviously preferable to stuffing in a whole mouthful and then having a full blown potentially life threatening reaction – so well done Zac, at the age of just 5 he has already learned to listen to his body.

So as 2014 begins we have a big year ahead, I am convinced and determined that his interest in food will continue to develop – it is my job as his Mum to help him with that and in doing so, embark on new food adventures to share in this blog.

I will also keep on at those doctors and keep sharing our news, because I know that so many others go through this – and so much worse, and it is important to keep sharing what we have learned and never give up. Everyone knows allergies are on the increase, you read about it so often in the press, but what you rarely read is how people cope with it on a day to day basis. So as this blog approaches its 2nd birthday my plan is to bring you yet more exciting, simple recipes that the whole family can safely enjoy. Wishing you a Happy and Healthy New Year.

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5 comments

  1. Amazing how kids can be so intuitive about things and that Zac has learned how to check things for himself! Great to hear that you’re getting so much better support but sorry to hear that there are more allergies seeming to appear. And, well done Mummy for helping him to begin to regain confidence in food. It’s so important to listen to children and not push them, whether it’s allergies that are the problem, or something else. Happy New Year to you and yours xx

    • Thanks so much for the lovely comment. Hope all is well with you and your little one. The dairy free life is still harder, in my opinion, than just gluten free. Still not enough good alternatives out there. Thanks for keeping in touch. Best wishes for 2014 xxx

  2. Fabulous news that you had a safe, happy and progressive Christmas. I’m sure your growing knowledge and polite persistance is contributing to your success with the Doctors. I also hope that the NHS is changing and improving its attitude and knowledge base regarding allergies. Your information as always aides me and many others 🙂

    • Thanks Emma. I hope you are well and had a great Christmas and New Year. I hope the business is going well too. I need to place another order. Really appreciate your support and kind comments. I hope you are making some progress too. It is hard going but it seems that things are starting to change – a tiny bit!!! Best wishes. N x

      • We had a lovely Christmas thank you filled with homemade gingerbread, mince pies and Yule log (among other things!). There was a fair bit of indulging in our favourite chocolate brands too 😀
        As far as health is concerned, my appointment before Christmas threw up no new information but rather confirmed no IgE allergies for me. Instead I was humoured by an agreeable Doctor who was happy to refer me to another dietitian. I live in hope that they know more than the last. In the mean time I will continue to assess my symptoms myself by way of dietary trials.
        After another skin reaction for little one, I have come to the conclusion that I may need to be more proactive with his diet assessment too. Our GP is uninterested in us both and the only way forward appears to be self diagnosis!

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