When Zac had his appointment at Great Ormond Street hospital, we were told of a drug that might help him – Nalcrom. The consultant, who I really respect and trust, said he thought it was something we should consider once Zac had got the blood test results. Great.
When we met our NHS consultant, she read his letter with this advice, agreed with it and gave us a prescription on the spot, before the blood tests had even been carried out. Both assured me that this could help his tummy, as it acts a bit like a ‘plaster’ on his gut. As both consultants (correctly) suspected that Zac has non-IgE mediated allergy, medication could be the answer and this is where I came up with my blistered foot analogy.
Because Zac’s tummy has been aggravated for so long, he ‘reacts instantly and allergically’ to many foods now, but he is not technically allergic to any of them. In the way that if you have a blister on your foot – all shoes are going to rub. It is the same for him when he eats. Most days he has a distended abdomen no matter what he eats, and according to the consultants this drug could help with that.
Apparently, using this could mean with proper dietetic supervision and advice, that we could try and challenge him with certain foods and get some solid nutrition, balance and flexibility back into his diet. Something we are keen to do as his blood tests did reveal his Vitamin D and iron levels to be on the low side.
We were also advised to give him (a non drowsy) anti-histamine twice a day, every day to help supress his over active immune system. We have done this and noticed an improvement. He does seem less lethargic and irritable – I guess because his body is not busy fighting itself so much. So, I am told, this combination of anti-histamine and Nalcrom could mean that in time, Zac can start to eat dairy and gluten containing foods again, with no ill effect. Great news.
Or is it? I am not sure. Firstly, do I really want him to be able dairy and gluten containing foods? I know there is much benefit to be had, but if I am honest sometimes I am very glad this restrictive diet totally eliminates processed and junk foods – e.g. no cheeseburgers and pizzas for my kid! With all the worries about what is getting into our food chain at the moment, I quite enjoy managing his diet so closely and keeping it as ‘pure’ as I can.
Secondly, I do not know how I will be brave enough to ‘run the experiment’. It is so hard seeing him struggling, that I would feel very anxious coaxing him into eating some cheese, just in case he still has a reaction. Thirdly, he is four now and is very careful to make sure his food is dairy free and gluten free. He knows he shouldn’t eat those foods, so how do I explain to him that it is ok now? He is so anxious about trying new foods that it will be a very tough ask – of both of us.
Finally, he has recently had a horrendous eczema outbreak. I am not sure why. Nothing in his external or internal environment has changed. I can only assume this is all part of the ‘allergic march’ I keep reading about, but to me it seems like a stampede in Zac’s case. I don’t know a huge amount about eczema but I do know that a lot of people find that their symptoms improve once they give up dairy. So how can I take the risk of introducing a known skin aggravation at a time when his skin is ‘in crisis’ anyway? He has not had any dairy for 3 years and is on a diet that should help his condition, yet all of a sudden he has gone from having skin like velvet, to looking like a teenage boy with spotty shoulders!
So as you can imagine, this prescription has been neatly filed with all of Zac’s medical notes and letters – until the other day. Our appointment to see the dietician was brought forward, so I thought perhaps I should make a start and soon, so I collected it. I was given boxes and boxes. Then I realised why. You have to take it three times a day. It is in capsule form, but apparently you can break them open and stir it into a small glass of water. Good job.
Not only is Zac afraid of a lot of foods (and doctors) after all of his recent experiences but he is also very anxious about taking medicines after some truly foul tasting anti-biotics to cure his arm infection. So getting this in him three times a day could be quite a challenge. Then it occurred to me, that one of his doses would have to be given at pre-school and I am not sure if they are allowed to administer this kind of drug. Will have to check it out. So the more I looked at this drug the more anxious I became. So I haven’t started yet. I feel I need to talk to the dietician and the consultant before going ahead with it.
The reason you have to take it so many times a day is because it is specifically designed to give you protection against the foods you are ‘allergic’ to. So if you take it an hour before your meal, you could technically eat a bit of cheese with no ill effect.
Do I really want to pump my little boy full of drugs three times a day just so he can eat ‘normally’? A big part of me is happy to continue as we are. As it is, Zac has enough hassle what with his daily doses of asthma inhalers, anti-histamine medicine, multi vitamins and daily slathering of skin creams.
I have read the ‘long’ leaflet that is enclosed and it also says that possible side effects are skin rashes and nausea. As this is what happens when he has eaten food he is sensitive to, how will I know if it is the drug or the food causing any new itching or nausea?
The leaflet also says ‘If signs of allergy do not improve within 2-3 weeks, your doctor may double how much you take.’ So he could be ill the whole time anyway? And if so, we just give him even more? I am still not convinced.
The most reassuring words on the leaflet were: ‘Nalcrom Capsules contain a medicine called sodium cromoglicate. This belongs to a group of medicines called anti-allergics. It works by stopping the release of the natural susbstances in your body that can cause allergic reaction. It also lowers your response when you are exposed to substances to which you are allergic.’ So it explains very clearly that it should work and it sounds like just the thing Zac needs, as it was explained to us that his body is in a semi-permanent state of hypersensitivity and overreaction. But I am still nervous. So I am going to wait until we see the dietician and consultant again. I feel I need more advice and supervision before embarking on this next step – also they have not seen him since the eczema outbreak and may decide that it is not the right time to do this anyway.
If any of you have any experience of this medicine I am really keen to hear. It sounds great and I would love to hear of some positive experiences before I give it a try. I know it might sound like I am being a coward and not doing Zac any favours by preventing him from having some medication that might help – but until I can be convinced that he is well enough to be challenged with his ‘trigger’ foods, I just can’t do it.