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.

This lady doctor had witnessed Zac’s skin infections before and had squeezed the pus out of one particularly nasty abscess. So when I went back I reminded her of this and explained that we are half way to getting a diagnosis for all of Zac’s problems, but still need to complete the tests recommended by Fox. She said she could not authorise anything as he was under the L&D specialist and the test would have to be carried out/instructed by them. Great.

So I pushed to have our appointment moved. We had been told we would see our specialist there in December, as the blood test results were all negative and she advised we stick to Zac’s restricted diet ‘so as not to rock the boat’. I read that as, ‘I haven’t got time to investigate this further, from what I can see, he is relatively well on this diet and can probably carry on that way for a while yet’. Not really good science though – is it? Surely negative blood tests, rule certain things out, but when you still have symptoms and other things to check out, you keep investigating, and possibly eliminating until you get to your conclusion?

Anyway, I got the specialist appointment changed from December to end of October and the appointment with the dietician came through relatively quickly. That appointment was last week. As ‘luck’ would have it, Zac had another nasty skin infection – this time on his knee. He had been prescribed yet more anti-biotics and it was literally at bursting point, so for the first time I had something ‘real’ to show them.

I expected a long wait. It even said on the letter that it is just a ‘clinic’ so times may be subject to variation! Nice cop out. Our appointment was for 11.30am. As usual I got there a bit early – just in case there was a miracle, and because you just know the day you are a minute late you will lose your place and miss out altogether. As it looked certain we would be there over lunch time, I took Zac a packed lunch. Good job. We were kept waiting just under two hours. The clinic was packed. So the minute we arrived, I could see that we needed to get a ‘good seat’ next to the best toys and in front of the TV.  I am not sure if it was deliberate or coincidence but the film that started just as we sat down was Lion King 3 – Hakuna Matata, which according to the song of the same name means ‘No worries’.  Ha ha.

Anyway, to break up the boredom, they send out a nurse every so often to get the kids weighed etc. So that was fun. Zac is very used to this now and behaved beautifully. We were both thrilled to see he had grown several centimetres from the last appointment and had a steady weight gain. Failure to thrive/stunted growth is an issue for kids with allergies and other food related issues, needless to say, so it is always pleasing to see that he is doing so well. His height was close to the 95th centile when he was 1 (just before he started to get ill) and over the last few years had slipped below the 50th) – a worrying drop? But his weight had always been around the 75th (quite solid) so I guess that is why they were never concerned. Apart from the skin trouble and very recent tummy trouble, he had been doing well, so I was not surprised to see he had now climbed to the 75th for height and trimmed down to the 50th for weight. But I guess that is just him changing from chunky toddler to slim schoolboy. So Hakuna Matata on that front at least!

After nearly two hours, and the gradual emptying of the lunchbox, his name was called. The dietician asked if the tests had been completed. I thought she would have the results, as they were carried out in the room two doors along the corridor and issued by the Doctor who was in clinic that day and had walked past us both several times. Luckily, I had the letters on me and explained that all tests were negative. She asked if the coeliac gene screen had been completed and I said no. She asked if he’d had any other issues and I explained that in recent weeks he’d had two episodes of what looked like ‘oral allergy syndrome’ – chronic itching/stinging of the mouth and slight tongue swelling. The triggers had been a tropical fruit ice lolly, the first time and a fresh tomato pasta sauce the second. All things that he had been tested for and came back negative on. She then said something I wish all the GPs I have ever met could have heard – you can still have an allergic reaction, even if you do test negative!!!!!!! So people beware, if you get a negative result to something you are sure gives you a reaction, it is still  best to avoid it – your body is trying to tell you something and it is safest to get it checked out – if you can persuade a professional to help you.

I explained about the vomiting episode after the jelly on holiday and she said it was impossible to know what might have been in that, but as that was the only food he ate that day, that I had not prepared, it was very likely that an ingredient was the trigger. Next I showed her his spot. She looked horrified. I explained it was his 5th since the start of July and she looked even more horrified. It was glowing red around the edge and green in the centre by this point. I asked if foods can cause this type of reaction and she said possibly!

She checked my letter again and asked when I was next due to see a specialist. I told her we were seeing Dr Ashworth at the end of October, but then mentioned I had seen her in the corridor earlier and noticed she was heavily pregnant. The dietician said, ‘Yes, you won’t be seeing her’. Oh great. Who will we see then? Someone who has never met Zac and is bound to dismiss us probably – sorry for being cynical, but I am sure you can see why after 3 hospitals, countless GPs and 4 years of fighting. She noticed I had seen Dr Adam Fox before and she asked if we planned to see him again. I mentioned I had got an appointment for early September and she said, ‘I think that is for the best, I cannot and dare not change anything in Zac’s diet at the moment, because we still don’t know what we are dealing with’. So after 5 minutes our appointment was over. We sat in that corridor and had watched Lion King 3 from start to finish and it was all for nothing. In fact, when we left the room, it had just started again and I could hear Hakuna Matata blaring out again. The irony.

So we walked back to the car, over 3 hours since we had arrived, having spent just 5 minutes discussing his case, to be told, it would be better to go somewhere else. And that is why it has taken me a week to write this post. I was so furious that it has taken me until now to be sure I could write this without raging and cursing them!

Today I feel calm enough to write and slightly nervous too, as today is also the day we are seeing Adam Fox again. We are seeing him at his private clinic at the Portland Hospital. I recently started back at work, good job too, as I can that in future, we might have to rely on private appointments if we are to get anywhere, and if working like a loony to pay for his medical bills is what’s required, then that is what I will do. I am just lucky that I have a great employer who took me on in the first place, stays patient when I need time off to deal with my poorly boy and is actually very encouraging and supportive.

So what do I think will happen today? I am pretty sure we won’t be kept waiting for hours on end. I also know that Dr Fox is interested in our case. How do I know? Because I took the probably cheeky step of emailing him last week and asking if he would like me to email the photos of Zac’s skin outbreaks. When we met I got the impression he is a ‘true scientist’ and believes in testing and not accepting that a negative test result does not tell you anything.

He responded instantly, thanked me for getting in touch and said that the photos would be very useful and for me to send the as soon as I could. He also asked me to send over copies of the correspondence between L&D hospital since we first met. He is probably one of the busiest doctors in the country and yet he took the time to reply personally to an email and thank me for getting in touch. Some might say it is because this is a private appointment and that forking out a few hundred quid is all it takes to receive that level of care, but I am not so sure. I believe that some people, like Adam Fox, do have a true vocation and are doing this because they care and want to help people and that is why he is at the top of his profession and that is why the vile GP’s at our surgery who alternate between dismissing Zac and poisoning him with overdoses of anti-biotics, are at the bottom of the pile.

I am pretty sure I know what Adam Fox will say today. I am pretty sure he will say that all of Zac’s negative blood tests, do indicate his ‘allergies’ are non-Ige mediated allergies and he must still avoid those triggers. I suspect he will again mention hisatamine intolerance and Eosinophilic disorder and the fact that Zac is atopic. I think he will suggest we start Zac on Nalcrom, which is the drug he mentioned once before. It works like an extra anti-histamine and stops the white blood cells misbehaving – which is what happens in eosinophilic disorder. He might mention Mast Cell Activation disorder, which is kind of the same thing. I wouldn’t be surprised if he says that Zac’s skin condition is all part of this. Zac’s condition makes him very sweaty, the natural grease barrier we all have on our skin to protect us from ‘germs’, is washed away by the sweat and as a result his skin barrier is permeable and that is how random infections keeping appearing in various spots. He might suggest more blood tests and atopy patch testing. I may be wrong. In a way I hope I am. But no matter what happens, I am 100% confident that he will not say, as one GP did, ‘the skin infections are just coincidence, a bit of bad luck, there is a lot of it about at the moment!’

Here are the pictures I sent through.

photo (14)

Jpeg

Jpeg

photo (16) (1)

Ready to burst.

Ready to burst.

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5 comments

  1. I truly hope you get some answers in your meeting with Dr Adam Fox today. I will be waiting with interest to find out how you get on.
    I couldn’t agree more with your view on the NHS diagnosis system (or lack of interest in diagnosis). I too have been fighting for an appointment with immunology. I have been to see the same GP many times and followed her protocol for seeing the dietitian first. The dietitian has admitted she can’t help and suggested a referral to immunology. I had to fight tooth and nail with my GP for the referral. Immunology are now telling me I have a 15 week wait for an appointment. The GP suggested speaking to PALS (patient advice and liaison service) about the timescale. They suggested talking to my GP!
    I am currently awaiting blood test results after a bad reaction last Sunday left me in agony overnight and rehabilitating all week.
    This system is a crazy process where you get shunted from one person to the next with hugely varying degrees of knowledge and care. My only comfort has been from sharing information with others online in an attempt to self diagnose and then present my findings to the NHS!
    Good luck for today’s appointment, keep strong x

  2. I hope today’s appointment with Adam Fox is all that you need it to be. Our son was finally diagnosed with “probable EGID” in January after 2 years with GOSH and we’re still battling everyday to make sense of what’s going on with him as it changes so frequently.

    It’s interesting you mention Mast Cell disorders as this is something I’m beginning to research since our GP commented that the combination of medicines M is taking (Cetirizine, Ketotifen and Nalcrom) suggested this might be an issue.

    Fingers crossed and can’t wait to hear how it all went.

    • Hi. Many thanks for getting in touch. Your blog is great and I really hope you continue to make some progress with your little man. It is so tough.It is so hard to get good support too, let alone information. Zac is also on cetirizine and I am sure nalcrom will be added after today. Will let you know how we get on. Best wishes. Nicolax

  3. Thanks Emma. Appreciate the support. Sorry to hear you are experiencing similar frustrations. It is very wrong. I think they hide behind a mask of ignorance sometimes and just pass the buck to avoid facing up to it and being the one who has to do some work. Sounds very cynical but it makes you that way doesn’t it? Thank heaven we all have each other. Best wishes and hope you are feeling better now. x

  4. Can’t believe that your local Drs are still dragging their feet over this! They should hang their heads in shame! Maybe a bit of professional jealousy is coming in to play here – they don’t being told what to do by the big boy. Glad to hear Dr Fox is being so supportive, hope he can get things moving for you xx

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