The most heart-rending response we got to John Scott's story was this e-mail to him from Amanda Cordell, mother of two-year-old Samuel.

Hi John - my name is Amanda Cordell.

I have a son called Samuel who will be 2 in January. On reading your article, I was surprised to find a story with such similarities to my son's. Unfortunately, I was not shocked by the reactions that you experienced - not only to food and medication, but from the medical profession too.

Burning skin
Samuel was taken to hospital 6 weeks after he was born with what I can only describe as major burns. We were told that he had infected eczema, possibly due to milk intolerance. He was treated with several lotions and potions and eventually with 3 different intravenous antibiotics. His skin seemed to calm down but he was constantly screaming and had both severe sickness and diarrhoea. To top it off he caught a stomach bug in the hospital.

Well, as you can guess, it never went away. After 7 very sad and stressful months of constant visits to our local hospital, GP, health visitor, and whoever else would listen, he was still failing to thrive. Eventually after trying soya milk, Pepti Junior, Nutramigen, Gaviscon, a low dose of Domperidone and being labelled a neurotic mother, I guessed I would have to do my own investigation.

In my heart, I knew that the constant 24-hour screaming (he would not let us hold him), skin problems (two baths a day plus lotions and potions), sickness and diarrhoea (10-15 nappies and at least 5 machine loads of clothes etc a day) were definitely connected.

I managed to find several international internet sites that spoke of reflux and multiple intolerance, and went armed with this information, my son and my mother-in-law to my local hospital. I requested again for them to send us to a paediatric gastroenterologist. They wanted to send us home again but Samuel threw up on the doctor’s carpet and I burst into tears and refused to leave until we were referred. The doctor finally agreed to send us to Great Ormond Street Hospital.

Referral to Great Ormond Street
I must say, the minute we walked through the door of Great Ormond Street my husband and I felt as though we had been released from the nut house. The specialist listened to every word we had to say and then calmly said 'you are right - something is wrong'. I am sure you know this was only the beginning, but at the time it felt like we had just climbed Mount Everest.

The screaming was helped by Rinitidine to stop the sickness burning his insides. A much larger dose of Domperidone was used to empty his stomach quickly. Neocate ws also given, alongside a highly restricted diet, as Samuel reacted to the simplest of foods. When this did not work, we had an endoscopy and colonoscopy with biopsies. After this, we tried Zirtec and an anti-inflammatory, both of which he reacted to.

Then more drastic action: a high course of Prednisolone, steroids reducing over 14 weeks, and Azathioprine, an immune suppressant. These were to be continued after the steroids, in the hope that this would keep him stable. By this time we had been given a name for Samuel's condition: eosinophilic gastro enterocolitis. But this did not define a cause, it was just a heading for a lot of symptoms - meaning that the medical profession was as much in the dark as we were.

The endless cycle
Samuel seemed a little better after this but he soon needed the steroids again, now every other day. It had been a year since we introduced any new foods and he was on a strict diet of Neocate, lamb, rice, potatoes, butternut squash, apple, pear and peach. But whatever we did, he continued on a cycle - sort of stable to unstable, varying in lengths of time. I began to think that he must be reacting to everything, just to a greater or lesser degree.

I also have a theory that he reacts to environmental chemicals - house smells, play dough etc. He even reacted to a calcium sandoz supplement, so I have to give him a neat calcium glutonate injection formula in his drink. Because he is stable for such short periods and because his reactions are both immediate and delayed, and seem to be triggered by anything which interferes with his immune system (infections, teething etc), determining anything for sure is impossible.

Behavioural problems
Over the last 6 months, Samuel has also started to develop behavioural problems, including hyperactivity. He is very destructive, bashing the hell out of anything, and self-harms by banging his head on anything that will hurt. Well, as usual, most ‘medics’ just told me that he had got to the ‘terrible twos’ early and that I was being neurotic again.

But by now I know that 99.9% of people know nothing about this condition. The only ones who even start to understand are a few physicians and those of us who live with it 24 hours a day.

We first tried to deal with this latest symptom with Zatiden (dual action antihistamine and cell masking), in addition to the other drugs. Fantastic! Within 2 days he was a different child - calm, responsive, new words spewing from his mouth. But within a week he started to slip backwards, and within 2 weeks he was having a full-blown reaction - skin, gut and finally head-banging. We stopped the Zatiden to let his gut calm down, and sourced an alternative drug with no additives, lactose etc - Nalcrom. Again, this was great to begin with but, after 3 weeks Samuel had become a wild child again - not sleeping, not eating, heaving and in so much pain with his bowel that he was out of control and self-harming once more.

This Friday I was not sure whether to call the hospital or call for a priest to do an exorcism. After 6 hours he emptied his bowels and became calmer. Needless to say, we stopped the Nalcrom on Friday. The gut has calmed a bit but the behavioural stuff is back in full force. Apparently the results are in from an endoscopy and colonoscopy done just over a week ago, and they want to put him on something else. I am still waiting to hear.

As you can imagine, we are beginning to wonder if putting anything in him is a good idea - food, drink or drugs! We are told there is a chance that at the age of six his immune system could kick in. We hope so, but do not want to wish his life away. I am afraid that when your day-to-day life is in such chaos, then today is all you can think about. I am sure it is the same for you.

Surely, with this becoming such a problem in our society today, the government should do more research to try and find out the cause? Or start educating people within the basic health service: food labelling, drugs without flavouring, cheaper organic food... I could go on and on. You speak of persistence in your article and I feel that this, above all drugs, is what is required to tackle a condition such as yours and Samuel's. It is like your own private war with your body. Good luck and keep fighting.

Kind Regards - Amanda Cordell

P.S. I have just received the new drug - an anti-inflammatory to be taken 4 times a day an hour before food, suck or chew (for a 2 year old?). It has 4 E-numbers and cherry flavouring. Needless to say we will not be starting it!

P.P.S. The results from the endoscopy/colonoscopy were not so good, as even with the restrictive diet and drugs for the last year, he still had the same lower bowel inflammation. Sadly, it has spread to the upper bowel, which may help to explain his behaviour, as I am told this is a more painful area. After some discussion with Samuel’s specialist, we agreed that the immune supressant may be doing harm as well as good. We are currently 3 weeks into a trial period without it. The first fortnight showed a huge improvement in bowels, mood, concentration, communication and responses. But the hyperactivity and aggressiveness have crept back, especially when the bowel is full. Modular feeding has been mentioned in the event that we revert to a full reaction even if this means a trial in stay in hospital. As you are aware, we can only try try try! As yet, there is no society for sufferers of total/severe multiple intolerance or eosinophilic gastro enterocolitis. It is no wonder, as dealing with it is life-consuming. I vow that as soon as I get time it is my first task! If, in the meantime, there are any other parents or sufferers who would like to get in touch please either contact me via Foods Matter on 020 7722 2866 or e-mail me at amanda.g.bailey@btopenworld.com

First published in 2005

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