Nalcrom (sodium cromoglicate) – should we try it? 11

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.

 

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11 comments

  1. Hi Nicola – I am so pleased to find your post about Nalcrom. As you say, there is not much information out there. Is Zac now on it?

    My 9-monther is dairy and soy allergic. He may have more allergies, but we are going to try Nalcrom to see if it helps his symptoms before eliminating any further foods.

    I just picked it up today (on a pricey private prescription – yikes!) and was wondering how i should give it to him. You mentioned breaking it up and mixing with water. Just wondering if you have tried it, if it tastes ok, and if you have found the best mix so far.

    • Hi. Thanks for getting in touch. Must be very difficult to have a baby that is dairy and soy allergic.I hope the Nalcrom helps. We haven’t used it yet. Our doctor changed her mind and decided we should wait until his allergy tests were complete. Now that they are, we are due to see her again and will discuss it again. Giving the little ones medicine is always so tricky.I have no idea how I will get it into Zac when the day comes. I will have to mix it with something, probably food as he only drinks water and would notice! Best of luck with it all and do keep in touch. Nicola x

  2. Hi dear! I have a little girl that is having/ had really bad eczema. She was about 3 months old when everything started. I had to go to hospital abroad and was prescribed Nalcrom. They did some blood test (not very accurate) and she was to have for 3 weeks Neocate only. Then we started slowly with solids and are having 3 times a day Nalcrom. Still her skin is not very well, I’ve tried it all: swapping emollients, creams, diet, steroid creams, protopic… I dont think Nalcrom is doing much, I went 2 weeks off it and eczema went bad, but now I am back and dont see any difference. Every doctor I spoke about it says it has no side effects, but is not effective as well. I am suprised to hear that they do blood test in UK, as my GP refused and wont send me to allergist too. I am really confused by all doctor and angry as I feel GP are not really bother about putting tones of steroids on her and prescribing me (my LO) so often antibiotics. In their opinion nothing can be done about allergic march (?).

    • Hi. Many thanks for getting in touch and sharing your story. Sounds like your little one has a lot to deal with. How old is she now? Must be hard for you all. I only know one other child on Nalcrom and he is ok on it. Zac’s doctors have changed their mind and decided to see how he gets on just be increasing his doses of cetirizine. Perhaps they are changing their mind about it. The side effects seem to be similar to the reasons people use it in the first place!
      The Oilatum Plus bath additive has been an absolute revelation. He has not had one skin infection since using it. You can get it on prescription and over the counter. Pricey at £11 a bottle but lasts ages and is worth a try. His skin is so soft now. But still ‘prone’. He has had a reaction to some ‘accidental’ dairy lately but I am sure it would have been a whole lot worse if it weren’t for the Oilatum plus. He was also prescribed Dermol for the outbreaks on his face. That worked better than anything we have ever tried also. Some of the eczema treatments just make him worse. It is a long and hard road and as you say the allergic march does seem to be unpredictable. So many people tell you they will grow out of it. But Zac is now 5 and getting worse, so that can’t be true. We recently met a new specialist, and she wants to re run all his allergy tests as his symptoms have got worse in the 12 months since he was last tested. If he does test positive this time, then, that will be proof won’t it? You get worse before you get better. Will share the results, as either way they might be of interest? Kind regards and best wishes. Nicolax

      • Hi Nicola
        Great to read your post – and feel less alone with an allergic child.
        My 2.5 year old daughter has been on Nalcrom for 15 months and for us it’s been amazing. My daughter was always constipated as a result of inflammation in her gut (like your blister analogy – the damage was done so she reacted to lots of food) and the Nalcrom just took this away within 3 days of taking it. We give it 30 mins before meals, mixed into fruit puree.
        Unfortunately however I think we’re now going to have to increase the dose from 3 to 4 capsules per day – the constipation is back and her growth has stalled again.
        Apparently it’s quite a natural ingredient from a plant in the Mediterranean so that makes me feel better about it too.
        Good luck
        X

      • Hi Minal, Many thanks for getting in touch and sharing your story. That is great news that it has helped your little one. Sorry to hear that she is getting a bit ‘used to it’ and needs to up her dose. Zac’s gut reactions were always the opposite to constipation, accompanied by bloating and cramps. Our doctor’s have decided to hold off on using it, as his symptoms have been stable for so long – but in the last year, he has had a few unexplained flare ups. We are not getting some new blood tests to try and understand what might be happening. So it is likely that they may decide to try it on him after all. I will feel a lot more positive about it, now I have heard from you.
        Best wishes and please keep in touch.
        Nicola
        x

  3. My little boy is nearly 3 and taken nalcom and cetirizine in the past, it got hi. To the point that we have been drug free for almost a year by avoiding his allergic foods. He now tolerates soya without drugs….He is however currently having a flare (he had some egg baked in a cake last week) so we are going to get him back on the nalcrom to try and manage the flare before he needs steroids…..

  4. Hi Nicola.

    My little boy has just been prescribed nalcrom and like you I am reluctant to give him yet more drugs so I was really pleased to find your blog.

    How did you get on in the end? Did you give him the nalcrom? Is he any better now?

    Thanks
    Kay

    • Hi. Thanks for the comment. We didn’t give it to him in the end. He was doing so well with anti histamine and the specialist decided we should wait and see. Like you I was reluctant to give him more drugs and thankfully we seem to have got away with it. He is 6 now and doing well. He is still on a restricted diet. He still has the odd day when his tummy is sore, upset and even swollen. Some days his skin it itchy and his eyes look puffy but will an extra dose of anti-histamine he usually settles down very quickly. Sorry not to be able to help more. I wish you and your little boy all the best. Nx

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