12 months later..progress has been made. 5

Today is ‘our’ first birthday. So please forgive me a reflective and self-indulgent post as I look back over my first twelve months as a blogger – a word I don’t think I had ever used just 13 months ago. The forthcoming anniversary had been on my mind lately, but due to a new job and the busy Easter holidays, I haven’t had much time to check it all out.

I thought it was around now that we got started. I knew it was April, but was not sure of the date. Bizarrely, I was clearing up from the Sunday dinner (whilst watching Julie & Julia for the umpteenth time), that I decided to have a break from the pots and pans and check today’s stats. There was a funny little icon waiting for me that looked like a trophy – it was a ‘gift’ from WordPress, to tell me that today was our birthday. Woo hoo. Spooky that I discovered this fact, whilst watching the film that made me decide to start in the first place. It was playing in the background on the evening Tom and I set up the blog.

Of course, I had intended to match the achievements of Julia Child and get a recipe book published, and to equal Julie Powell’s achievement of writing a blog that got so big it was turned into a film. Needless to say I haven’t done that – and almost certainly never will, as food intolerance and eczema are not attractive themes, but I am still quite proud and have been surprised by the things that have happened in the last 12 months.

The thing I am proudest of is that somehow – by meeting new friends, through various social media and communities and finding out about others experiences, I acquired the knowledge and courage to challenge the doctors and push them until Zac finally got the attention he needed.

Soon after I started, I visited the Allergy Show. Never ever did I think this (allergy) universe we came to live in, would be so enormous. I remember walking around Olympia and seeing independent cake makers, large well known ‘bakers’, medical types and Sainsburys and Tesco all crammed in, fighting to be seen as offering a solution to the poor sufferers. That day made me realise how easy Zac has it in comparison to others, but it also made me realise it is important to push on and find out more and then share as much as I can, because it is all so mindboggling.

During the summer and early autumn, Zac acquired some new symptoms that swerved us away from the food focus and gut trouble and into severe itching and skin trouble. The worst episode was a spotty outbreak on his elbow that resulted in a huge abscess that required emergency treatment by a doctor. Never will I forget the screams as she squeezed the green pus out of the hole that had already opened due to the pressure building under the skin. I don’t think that junior doctor will ever forget it either. She went pale as she did it – and slightly deaf probably.

This episode made me even more determined to get an appointment with an allergy specialist. The GP’s finally agreed and referred us to another local hospital. We had been discharged by the two previous hospitals we had been seeing – he will probably grow out of it, they said. I felt confident this large one would be more interested as they have a specialist Allergy team, so I was devastated when I kept receiving letters saying that his appointments had been rejected. I didn’t know a hospital could do that.

With his screams still ringing in my ears, and the scars on his elbow still so livid I decided to write to my MP. The legendary Ms Nadine Dorries. It just so happened that two days later she ‘popped up’ in the jungle in Australia and hit the headlines for all the wrong reasons, in my opinion. As an ex editorial assistant on a local newspaper, and as a ‘retired’ marketing professional my natural instincts to see a PR opportunity took over and without thinking too hard I blurted out my anger on Twitter.

To my astonishment Channel 5 news, ITV news, The Evening Standard, The Sunday Mirror and the Times all got in touch. The Sunday Mirror actually just turned up on my doorstep which was slightly alarming, but hey, I guess deep down I knew and secretly hoped the press would pick up on it. I just didn’t realise they knew where I lived! My biggest hope was that they would actually give me some cash to pay for Zac’s private appointment that I felt I had been forced to pay for once the NHS had rejected us again. Of course, that didn’t happen but I did end up with a letter from Ms Dorries, I also got my NHS appointment rebooked and brought forward, and achieved a certain amount of notoriety in the school playground. The local papers had picked up our story too and Zac and his ‘ted’ are now quite famous.

Before we got to see the NHS doctors, we did see Dr Adam Fox at Great Ormond Street hospital and that was the biggest breakthrough of all. He was the first doctor who had ever examined Zac. Until this point no-one had even lifted up his t-shirt to look at or touch his tummy. Alarming when you consider, I had seen every GP at our practise and 2 paediatricians, not to mention some emergency doctors when he was at the peak of his tummy troubles.

He listened with interest and asked lots of questions. He seemed to genuinely care and I had to supress an urge to hug him at the end of the appointment. In less than an hour we had learned more than in the previous 3 years and left feeling exonerated – we are not obsessive parents, our concerns were borne out of real symptoms that should not be ignored, but thankfully could be treated.

He mentioned a condition I had read about, but not one doctor had mentioned before. Non IgE mediated allergy. http://www.devonpct.nhs.uk/Library/Treatments/GL01%20Non%20IgE%20mediated%20food%20allergy_children%20in%20primary%20&%20secondary%20care_Final.pdf

Thanks to unhelpful and uneducated press pieces, there are a lot of misconceptions about allergy, food intolerance, coeliac disease and the symptoms and reactions. Having an unpleasant and sudden reaction to a food is still an allergy – not just an intolerance, it doesn’t have to result in anaphylaxis to be an allergic reaction.

After seeing Dr Fox, we did get back into the NHS system and are being looked after quite well. Zac finally had some blood tests. Another traumatic occasion that required three of us to hold him down as they took eight vials of blood – four from each arm. Since then he has acquired a fear of doctors and hospitals and when we went back for the skin prick testing he was very distressed.

The reason we went back for skin prick testing was because they had not got enough blood from the first tests, to check him for all the potential allergies that Dr Fox had suggested. I was told that the skin prick testing would be less distressing and gives a quicker result. The second part of that statement is true. It certainly all went well to start with. He seemed to understand that the nurses would just draw on his arm and drop some water on, then ‘push it’, but clearly it really does feel like a ‘prick’ because he went through the roof after the first one and it took four of us to get this test complete.

It is never nice to feel your child fighting to get out of your arms as someone punctures his skin, but others go through much worse, so Tom and I kept trying to reassure him with kind words and kisses until it was over. Happily all of the results were negative. This is great news, because Zac has tested negative for allergy to everything his body appears to have a reaction too. This means he is unlikely to have an anaphylactic reaction to any of these things, so that really is something to be thankful for.

But it does mean that we are possibly, as Dr Fox suggested, looking at Eosinophilic Disorder, http://www.fabed.co.uk/what-is-it.html which causes non IgE mediated allergies. The blood tests and skin prick tests look at IgE reactions. Zac does not have those, but as Dr Fox and our new NHS specialist agree, he is having a reaction – that looks allergy, and should still be kept away from the foods that are making him ill.

So why am I telling you this? It is because I know that I am not the only parent who has had to fight for years to see a doctor who understands this lesser known condition. Zac is four and for three years, we did not know what we were dealing with. We just guessed, and the doctors we had met until this year, seemed happy for us to base his diagnosis on my anecdotal evidence and nothing else. It is wrong that they do this. It is wrong that I have had to get our pictures in the Sunday papers just to force our local hospital to give us an appointment let alone get him tested for allergies, which can be fatal.

Other parents are having the same struggles getting a diagnosis for their children, because too many medics write it off as ‘toddler tummy’ and are not interested enough to get children properly tested and a treatment plan developed. Left undiagnosed and untreated it can result in hospitalisation. This has happened to Zac a couple of times and that is why I want to develop this blog further in the next 12 months.

Feeding My Intolerant Child is not an accurate title anymore. He is not simply intolerant. He has a rare condition that few people are aware of. So that has been my big ‘result’ this year. We got an answer and we have an action plan. I have learned a lot and I want to share it with all the other people who are going through this. Negative test results do not always mean there is nothing wrong with you, sometimes they actually confirm something else.

I will keep posting (simple)recipes, I will keep sharing news articles and I will let keep you up to date on our dietary adventures and discoveries. Not because I think I am a great cook or deserve a book deal, it is because I just want to help people. There is so much information out there and yet it is so hard to get past your GP and get anything confirmed. If this post has helped just one person realise, that their symptoms are ‘real’ and probably non-IgE mediated then I have succeeded. And if it has helped one other nervous baker like me conquer rock cakes, then I am even more proud.

GPs generally don’t take kindly to self-diagnosis, but sometimes you have no choice. If I had taken the advice of the ‘specialists’ at the first two hospitals I would be regularly challenging Zac with foods that make him sick and risking hospitalisation for no sound reason.

If I hadn’t started the blog I am not sure we would have got to this point. Zac would still be unwell. I would still be a hopeless baker, I am now just a ‘medium’ cake maker and I wouldn’t have met so many new friends in our online allergy world.

Since day one I have been amazed by the amount of people who have contacted me with words of support and encouragement. People have sent me so many tips and shared stories with me and it inspired me to keep pushing and to give something back.

The next twelve months look pretty exciting. We have the MAD Blog Finals coming up and an amazing ‘finalists’ day out LegoLand. So thanks to everyone who voted for me and thanks to everyone who has followed this blog, made contact and shared information and advice. You have all encouraged me to carry on. Please keep in contact and feel free to share any of your stories and experiences.

In a few months, Zac is due to see our lovely new dietician and allergy doctor. We are going to work with them at overcoming his fear of food, whilst trying to improve and (safely) broaden his diet and I expect these adventures will be the source of many future blog posts. So it doesn’t look like I will run out of material before the next 12 months is up. Cheers everyone.

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5 comments

  1. I find your blog/story very interesting as I am someone who had a skin prick test done in childhood, I was allergic to everything (& still am) but I don’t have anaphlaxis reactions & people always question that

  2. Fantastic blog as always. I read your posts with extra interest following mine and little ones problems. You have helped me continue on my journey to fight the medical profession and find out why we get so poorly. I wish you, Zac and the rest of your family a very happy year ahead.

  3. Like every one else I enjoy reading your blog as well as hearing about Zac’s progress.As the saying goes ‘ What doesn’t kill you makes you stronger ‘ Would be happy to help out anytime as I am only in Moor Lane

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