Zac has allergies and needs to be tested asap – I knew it and GOSH confirmed it 10

This morning we had our private appointment at Great Ormond Street Hospital. As I suspected, we had a wonderful consultation and came away with some answers. The doctor was warm and friendly and seemed genuinely interested in Zac and his case. He even examined Zac – something not one doctor has ever done before. None of them had ever laid a finger on his tummy or looked at his skin.

I explained the whole story and he talked us through his thoughts and explained why Zac has had some of these incidents and symptoms. The basic conclusion is that it is almost certain that Zac does have several allergies – not intolerances – but ‘real’ allergies. We cannot be certain what they are without proper testing and so Zac will have some blood tests as soon as they can be arranged. He said it was important that we test him for everything, as everything we ‘know’ has been based on guess work so far and my ‘food diaries’ and elimination tests.

The doctor is quite certain Zac has an allergy to wheat rather than Coeliac disease, however he is going to screen for it in the blood tests, as he feels that everything needs to checked – and the symptoms can appear similar. He also feels that there is definitely an issue with cows milk protein and that needs to be looked at too.

He described three types of allergic reaction/allergic type people and Zac falls into the middle group where people have a relatively delayed reaction but it is most certainly an allergic reaction and not simply intolerance. He said the clue that Zac’s problem is wheat and not gluten is that in general he has so many classic symptoms of a child who is in the ‘allergic’ response.  In fact the episode that hospitalised him immediately after the Coeliac test was a big sign. He had eaten wheat containing foods for three weeks and his body had a massive allergic reaction hence the 40+ fever and rash. I knew it!!!

 

I am so glad that there is no need to make Zac eat containing foods in order to prove anything. I was very anxious about this and the doctor agreed that we should not challenge Zac with any suspect triggers – particularly wheat – as it actually quite dangerous for Zac and will achieve nothing. As he said, he will never be able to eat enough wheat to get the right result – he would be too ill. Which is what happened before. He also said it was peculiar the other hospital thought they could have got a result after three weeks – apparently three or months is closer to the norm.

So the next steps are – full blood count, full allergy screen from his blood and test him for every known allergy, check his vitamin D, calcium, iron levels are all ok. Once we have results we can work at managing his allergic responses with a mixture of anti histamine and another drug. It will ‘smooth’ the lining of his gut and he may find he can start to tolerate certain amounts of certain foods. He described it a bit like having eczema in your gut. Imagine it is sore, itchy, dry and inflammed. This medicine acts like a cream and soothes it so it is no longer irritated by ‘invaders’. We will also need to see a dietitian. He recommended a lady who he rates very highly, not only she is an expert, but she also has allergies herself knows what it all feels like as well as what it all looks like. He says she is the best and he knows she can help us navigate our way through any vitamin deficiencies he may have and can work with her and him to desensitise Zac and his triggers.
He said the tests are simple but would cost a fortune privately and is writing to my GP’s as a matter of urgency urging them to carry them out at the surgery and send him the bloods. So it won’t cost us anything.
He said he thought we had not been treated well by those we had seen and Zac could have and should have been tested years ago. He would never grow out of these allergies without full testing and clinical help and most importantly the correct drugs.
So now I just need to wait for the letter to come through to me and the GP. As soon as I receive it, I am to call my surgery and tell them to take the bloods. Once the bloods are done, we will receive results and he will write to us telling us what to do next – another consultation, more tests, get the drugs, desensitisation, seeing the dietitian etc etc.
It will all take a while but I am convinced we will get through this and he can be ‘cured’. I feel quite emotional about it all because as as the doctor said it is clear that he should have been tested after his swine flu and at every other time I have requested it and presented with new allergic reactions. I feel so cross and sad for Zac and think back to all those times his temperature has hit 40 and how ill he was. He said this is all caused because Zac has allergic type reactions to things such as a common cold.
He believes the swine flu is most likely to have been the catalyst, as he was so young and so very ill. It messed his system up quite badly. But he also said, that as he was quite unsettled before, was showing signs of milk intolerances/allergy and had a lot of runny nose etc, it is also partly due to an unfortunate genetic cocktail with two sets of typically atopic/allergic families. Even the most recent blistering, was probably caused by this. He probably did get a spot, it got a bit infected and in normal people it would have scabbed and gone away but it created an allergic reaction in Zac and that is why he is taking so long to get over it.
And that is about it really. He was so wonderful and kind and made me feel that we had done a great job keeping him so well and safe when he obviously has some problems that require further investigation and treatment. I had tears in my eyes on the train on the way home, looking at Zac talking to his bear and watching the world fly past the window. He is so brave and must feel quite dreadful, quite often, and I am just so frustrated that it went on for so long. I know I should have taken him to see this doctor ages ago but those other doctors had half convinced me that there was nothing wrong and the ‘NHS believer’ in me had a misguided faith that they would come through for us. I was wrong.
So I am very happy to have some answers and very angry indeed that three hospitals and every GP at my local surgery rejected my request to have him allergy screened. Once I have my letter from today, I will be sending it along with a complaint to each of the hospitals, my local surgery manager and to my MP – she might be back by then and perhaps she will be keen to help!!!
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10 comments

  1. Oh Nic, I’m so pleased that you have gotten some answers (at last) and so angry at how long it’s taken and what a battle you’ve had to get them! It’s great that Dr Fox has started you down the path and I hope that things continue to move forwards. Hopefully Zac (and you) will now have the care and advice that he (you) so desperately needs. xxx

    • Thanks Nikki. I could have cried. I knew I was right. I am just furious that no-one believed me. He says he often sees mothers who are starting to feel convinced that they are crazy – partly because of how hard it is to get a diagnosis. I am so relieved to know that now have a planned course of action – albeit three years late!!! We are just lucky that Zac never had a dangerous reaction in all that time. Thanks for the kind words and support. Much appreciated. lots of love xxxxxxxx

      • hello I posted on yr site a few months ago and although have not recently due to my own battles supporting my son and his health concerns,.i.have been following yr story and am so pleased that dr fox.has given u some of the answers and reassurred u that u have done an incredible jpb of looking after zac despite the awful treatment by the nhs. Gd luck on yr journey to full health for zac, take care Tora xx

      • Hi. I do remember you. Thanks for following us. We are all feeling quite relieved this evening – think we will start to make some progress now. Just doesn’t seem right that it has taken so much to get there. Kind regards, Nicola x

  2. You have made me interested in having an appt with this doctor! MyItchyBoy seems to have such a sore tummy a lot of the time and when he kept getting a high temp and cough every few weeks over the summer only one medic suggested we try piriton and that it was likely a sort of hayfever reaction to wheat. She was right. Found out later that she was some kind of super nurse, not even a doctor. It drives you nuts, doesn’t it?

  3. So pleased for you that you are now getting some guidance. We as mummies always know when something is not right and it’s so hard to argue with these experts, allergies are not taken seriously enough.
    So sorry poor Zac has had to suffer for so long, you’ve been brilliant in persevering and working out as much as you have without any professional help.
    It’s excellent that the Dr is going to try and refer you back to the NHS after all if they had done their jobs…
    I’m sure you are aware (but just in case) some gluten free food still contain wheat starch, so be very careful when you are selecting ‘safe’ foods.
    I’ll be following Zac’s progress via your blog – good health Zac!

    • Thanks for getting in touch and for pointing out the reminder about wheat starch. Good point. It is an absolute minefield. Looks like we all have to keep working together and helping each other, because relying on the doctors is a bit ‘risky’ as many are just not up to the job. Kind regards and best wishes.

  4. This is fantastic news, I had tears in my eyes reading as all mums will know how it feels to want to do the best for their children. You have done a fabulous job of persisting with a proper diagnosis for Zac. You have also shown lots of people that this journey is difficult but essential to get a proper diagnosis. I feel full of determination for my own appointment this Friday and suspect that I will be getting some of the same unhelpful advice along the way. I have been told by the GP to find out more about my own food intolerance/allergy first before tackling little ones problems. I will not be holding back on finding out more for him at the same time as I don’t want him to suffer any delay!
    Keep strong and Thank you

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