Eosinophilic disorders and
Way back in 2005 we ran John Scott's story in the Foods Matter magazine. (John, at that point, had been living on elemental infant formula for the previous 15 years as he was unable to tolerate any foods at all.) We got a number of heart rending responses to John's story, one of the most upsetting being an email from Amanda Cordell, mother of two-year-old Samuel, which we are reprinting below.
Since then things have definitely moved on, although sadly, neither Samuel nor his younger sister, Heather, are very much improved. However, Amanda has, as she promised at the end of the original email, founded a support group, FABED, for those trying to cope with eosinophilic disorders – and FABED are working in association with the APG to hold the first UK Eosinophilic Gut study day/conference.
We have asked Amanda on a number of occasions to update us on Samuel's story but, reasonably enough, she has been 'reluctant to publicly share our difficult story'. However, with the first eosinophilic conference only two months away, she decided that the time had come.
So, below you will find, Samuel's original story which sets the scene for the developments since 2005, and then an update on where the family are today. (Click here if you want to go straight to the update.)
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.
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
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
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.
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 or e-mail me direct.
The last 7 and years have been life changing in as much as, our family has had to learn to fit around this disorder.
To follow on from Samuel’s story we went on to try stronger immune suppressants and other nutritional formulas only to learn that Samuel is an extreme case. We were right his body does not tolerate oral medicine or food and is reactive to environment, chemicals and in addition he is highly allergic to house dust mite.
Winters are harder, lack of Vitamin D and
His skin is generally controlled by diet apart from the odd flare and medicated baths. Ongoing behaviour problems are without a doubt connected to this condition for many reasons, pain / frustration / anger understandably, alongside the chemical / toxin reactions caused by food, drugs and environment. Amazingly he only RAST and skin pick tests positive to egg and house dust mite, yet as an example he is so sensitive he can not even use toothpaste to clean his teeth without having a reaction.
Due to the total drug/food intolerance we have continued on a highly restricted diet with Samuel’s weight being maintained by elemental feed called Elemental Extra E028. We are very proud that he drinks this as many children have to be fed by tube due to the horrible taste and/or the lack of ability to consume the quantity needed to maintain their weight.
In 2007 we had our daughter Heather, research was not advanced enough to advise us the best course of action but we took every precaution possible using hindsight as our guide.
Despite our efforts of me breast feeding her whilst on a restricted diet Heather developed symptoms and was placed on Neocate Elemental feed at 6 months, she then remained well till weaning. But as time passed it became clear that Heather was also suffering from the same symptoms as Samuel: distended tummy, distressed/screaming, not sleeping, eczema and 10 or so loose bowel motions a day, recurrent infections and rhinitis. Thankfully due to experience we were able to recognise this and gain a diagnosis quickly.
And for those of you who have not had to live on a highly restrictd diet, that means rice, potato, chicken, turkey, cooked apple and peach, fresh pear, sunflower oil, salt, some green vegetables on rotation. All foods cause reactions but these are currently the most tolerable, but this can change at any time depending on how agitated the gut/immune system is.
Those of you who live with food issues and chronic illness will understand this affects every aspect of your life - socially, school, work, emotionally, physically and financially. When it is your child who is suffering it affects the whole family. It is a 24 hour care regime and we often say that we are normal till we leave home!
Samuel and Heather this year.
When Samuel’s story was published in 2005 we really thought we were the only ones. How wrong we were! In fact I still receive emails from around the world in response to that article.
Shortly after it was published I received an email from The Lucas family who were amazed to read a story so like there own. Having had 3 children with similar problems of varying degrees, they were astounded at the common thread between Samuel and their son Callum. Needless to say we went on to become firm friends.
The emails kept coming and the need for a British support group became obvious. In January 2006 the Lucas family and I launched FABED Families Affected by Eosinophilc Disorders a yahoo online group supporting families. Linking together those living with this rare condition thus avoiding the isolation it causes, sharing information and tips to help manage daily issues.
By 2010 FABED had grown to support over 250 families at which time we took the leap of faith and registered as a not for profit British Charity. Registration number 1143267
SUPPORT – AWARENESS - EDUCATION
In our first year we achieved full charity status with thanks to the fantastic fundraising efforts by our members. We also held our first family event bringing families together in a safe environment, where socialising amongst other sufferers brought new friendships for adults and children alike. It was an amazing couple of days with outstanding rewards for all involved. Details of this year’s family event can be found on our website.
Over the past 9 years we have watched Great Ormond Street and other leading Doctors from around the world fight tirelessly for eosinophilic conditions to be recognised but there is still a very long way to go. In order to increase awareness and understanding FABED have produced a medically approved leaflet which you can download here – or contact us via firstname.lastname@example.org.
EOSINOPHILIC GUT DISEASE U.K Conference 8th Sept 2012
We are delighted that with thanks to our sponsors FABED are working in Association with the Academy of Paediatric Gastroenterology to bring the 1st ever UK conference for eosinophilic gut disease.
This event is being held on the 8th September 2012 at the Institute of Child Health, London – full details can be found here.
First published in 2005; update in July 2012