Yesterday was a big day. Zac had his follow up appointment with the allergy specialist to discuss his blood test results. He also had an appointment with the dietician. I am happy to report it all went well.
Zac was very anxious going in for the first appointment and when we walked past the room where he’d had the blood test last time, he pointed it out and shuddered! When the bloods were taken (over 3 months ago) he was extremely traumatised. He had to have 4 vials of blood taken, from each arm. They had put numbing cream and a plasters over both elbows to prepare the skin – but perhaps unsurprisingly, Zac had an ‘allergic’ reaction to those and looked like he had been branded with a hot iron when they removed them. Rather than numbing his skin it was ‘on fire’ and he screamed the place down.
Anyway, yesterday we saw the dietician first and she was lovely. He cried when he first entered her room but she had a lovely manner and soon assured him that she wouldn’t hurt him. He’d had his height and weight checked on arrival and she said that they were perfect and she could see he was thriving. We had a discussion about his current diet etc and she confirmed that his anxieties about foods are normal and it is ok for me to ‘sneak’ foods in with whizzed up pasta sauces etc, as it is crucial we get the good stuff in him, by any means.
I was anxious that she would want to discuss food challenges, which I don’t feel we are ready for but I am happy to report that she said she needs to know more about what foods and allergens he is sensitive to, before going any further. So despite all the blood tests coming back negative, she felt it was worthwhile doing skin prick testing on everything. Several of the suspected triggers had been ‘left off’ the test last time, as they had taken ‘insufficent samples’, so they are back on for this next round.
The dietician explained that she really wants to help us balance his diet and help him conquer his fears but wants to be 100% sure there will be no mishaps along the way – and that is why she wants to test him first. So that was very encouraging.
She said it is very normal for a child like him to be afraid of food and we can work on that. She said the vitamin D, calcium and iron are the levels we all need to watch. In a child like Zac it is more important and more difficult. He had actually tested low on all of them previously and these are the main areas of concern, at the moment.
Since the results came through he has been on a multivitamin. He was prescribed ‘dailivit’ drops – but wouldn’t take them. So I tried Bassetts Soft and Chewy – and he likes them.
The pack says they have all a child of his age needs, so I hoped they would be ok. I told her that was all I could get in him, half expecting to be told off, but she was fine and said they were exactly the same and was just happy he was taking them.
As with previous dieticians we have met, she was very concerned about his dairy replacement and calcium sources. I told her we used Alpro Soya Junior milk, and the yoghurts. She was pleased with those and said she was also keen to try coconut milk as it is an excellent replacement. She wanted to include this in the skin prick testing though, to be sure it is safe before we start experimenting. Another reassuring sign. She is clearly a very thorough dietician and thinks hard about being super careful and taking things very slowly.
She also enquired about eggs – because they are so nutritionally sound and efficient, but also one of the most notorious allergens for those predisposed to reactions. I mentioned he’d had both cooked into things but never on their own. I said he’d had no reactions but she wanted to check anyway, because people have different levels of response, e.g. some can tolerate egg baked into cake, but are very sick from scrambled eggs or omelette. So eggs are now on our skin prick test list too.
She took notes about his eczema and said there are many triggers and she will bear that in mind as we work through introducing new foods. With many allergy treatments, they ultimately work towards desensitising and reintroducing suspect foods. I said I feel very anxious about dairy, because it has always been his worst trigger and it is a known eczema aggravation. She was happy with that and said she has no intention of challenging him for a long time yet. At the moment her main focus is on working within the restrictions we currently have and optimising his diet to ensure his future health. I could have kissed her at that point. Finally someone who cares and can see what I mean and how I feel.
Another test that was ‘missed’ at the blood screen, but requested by the specialist was a coeliac tissue screen – for HLA DQ2 and DQ8. She said this simple test is the best way to rule it out once and for all. If the test is negative, then despite his reactions to gluten, it is almost certainly not caused by Coeliac disease. So that is now back on our list for next steps – shame they forgot last time!
Next we saw the doctor. The dietician had debriefed her on our discussion and her conclusions and she agreed on all counts that this was a very sensible plan. She said she didn’t feel that it was the right time for us to introduce nalcrom – a drug we had discussed using, that depresses allergic reaction, a bit like anti-histamine, as gut wise he is ok and we are not ready to introduce food challenges. She was impressed that he has been stable since we last met, and said she thinks we should just carry on as we are and let him get bigger and stronger and more mature and then look at challenges when he is a bit older and able to understand why we need to give him the odd bite of something.
She said she will see him again in six months, but the tests will be done sooner and the hospital will call me. She said that they are not too traumatic, and they just drop some of the allergen on the skin surface and push down gently to see what the skin does.
Here is a link explaining. Quite reassuring but I still think my husband will have to come with me that day as Zac will take some convincing and restraining, if the last experience is anything to go by.
The main thing the doctor did confirm is that the results are indicating his allergies are all non IgE-mediated and so she suspects the others may be too. But that doesn’t mean we should stop anti-histamines as his body still has an allergic response. We just have to stop them in the days leading up to the test, as they will affect his responses.
I spoke about the eczema and asthma and she said it was difficult to be sure what allergies might be making those worse. The test results might help, as will the diet monitoring.
So it was good in many ways, but really there is not much that is going to change with Zac. She did say children can grow out of these allergies but it can take them well into their teens, and they may still be sensitive just not so much.
It might sound odd, but I cannot wait for the skin prick tests. I think it will be very interesting to see if he does show positive results. It seems so odd that all his bloods were negative, yet his responses to all allergens is always so sudden and often quite extreme. I wonder if it is possible to show negative in blood, but react positive on skin. Do any of you know? Please get in touch if you do.
If it is all negative again, then I guess it totally confirms what Dr Adam Fox said to us, and has written in guidelines to health professionals – there is such a thing as non-IgE mediated allergy and it is to be taken seriously. http://www.nice.org.uk/nicemedia/live/13348/53219/53219.pdf
I also really liked the final slide at the end of the video on the Allergy UK website, about skin prick testing.
“Taking a patient’s history is the most important part of diagnosing allergy and the test results are only to be regarded as confirmation of that history”.
Reassuring words to those of us who have been fobbed off by less conscientious GPs and paediatricians. It has taken us over 3 years to get to this point, despite having been seen by every GP at our practice and consultants at 2 other hospitals. I also had to pay for one very expensive but totally worth it private hospital appointment and alert the national press. Finally, we are making progress. I no longer feel like a neurotic mother. We have a great consultant, a great dietician and most important we have a diagnosis and action plan – oh and a big and happy boy – mostly!