So today, you have probably read The Guardian article on over diagnosis and over treatment of EGID at Great Ormond Street Hospital over the past seven years. Having been in the middle of this for all of those seven years, I can assure you there is MUCH more to the story. There is more info here, sadly the Syrian situation meant the Guardian article was cut down. It's STILL not the whole story though.
Warning: This is super long. The events at Great Ormond Street over the past few years have left many of my friends and I reeling, collateral damage as the Gastro department attempted to extricate themselves from a hugely damning - and damaging, had it been made public - investigation by the Royal College of Paediatrics and Child Health. What followed their investigation in 2015 should make you angry. Very angry. This hospital persistently campaigns for charitable funding over and above any other hospital in the UK. Many departments are centres of excellence, but not Gastro. The RCPCH identified considerable failings, but in an attempt to restore order the proverbial baby went out with the bath water. Good doctors were scapegoated along with parents and the biggest losers of all were the patients.
Children.
Our Story
We first went to GOSH at the end of July 2010. With a very strong family history of reflux and associated gastro issues, also seemingly non-associated non-gastro issues, we were desperate for answers. As per our story here http://thereciperesource.blogspot.co.uk/2014/02/why-i-set-up-recipe-resource-long.html we were making progress on the reflux but struggling with motility issues, distension and a host of other issues.
We initially saw our new consultant privately, following an NHS referral from our local hospital being moved to another Consultant. (Our local paediatrician was keen for us to see this particular doctor because she had several patients under him and felt he was most expert on allergic gut conditions and would aim for the most normal approach possible, unlike some consultants at GOSH who were renown for pulling all food and imposing formula only diets when EGID or similar was suspected.)
Our consultant was quite thorough but very quickly fitted both twins into the allergic gut camp during our discussion.
The photo below of our son’s hugely distended abdomen concerned him considerably. He later said he was concerned this was symptomatic of Pseudo Obstruction but in actual fact it was more connected with the 12 sachets a day of Movicol he had been prescribed locally for some time - something I had been concerned about. Movicol is the same plastic that is in disposable nappies. All parents have no doubt seen what happens when a toddler in a nappy sits in water.... it's a great drug for those with hard stool, but if your gut can't move loose stool, it certainly isn't going to do a great job of moving large volumes of loose stool...
The photo below of our son’s hugely distended abdomen concerned him considerably. He later said he was concerned this was symptomatic of Pseudo Obstruction but in actual fact it was more connected with the 12 sachets a day of Movicol he had been prescribed locally for some time - something I had been concerned about. Movicol is the same plastic that is in disposable nappies. All parents have no doubt seen what happens when a toddler in a nappy sits in water.... it's a great drug for those with hard stool, but if your gut can't move loose stool, it certainly isn't going to do a great job of moving large volumes of loose stool...
We were prescribed medication - cetirizine daily, sodium chromoglycate and maintained our high dose of PPI medication (acid production suppressant) and were booked for review. Unfortunately our son’s motility issues were no better so he was booked for a gastroscopy and colonoscopy. This was no knee jerk reaction. Our son was going 2-3 weeks without passing stool then blocking the toilet, and was in huge discomfort. We were told that significant eosinophils per hpf were found throughout his bowel, in addition to lymphoid hyperplasia and he was diagnosed with Eosinophilic Enterocolitis.
There was discussion as to whether Lymphoid Hyperplasia is EGID “waxing” or “waning”, and I actually asked how he knew eosinophils were intrinsically bad - or whether they in fact be part of the repair process? I know of many families for whom LH became the sole reason for diagnosis, and later many more who were diagnosed on symptoms alone. I suspect the desire to reduce invasive testing was the paramount concern for our consultant, but however well intentioned this meant some were perhaps labelled without supporting evidence. This should however be weighed against the merits of trialling treatments to produce resolution as quickly and easily as possible though with minimal discomfort and maximum gain for the patient. For this reason we never queried his assertion that our daughter was also an EGID patient.
Over the next few years our children never really became symptom free, although treatment DID mean they were better managed, growing properly and thriving.
This should not be understated. Gt Ormond Street is not a local hospital. It's usually a place of last resort, where children with chronic or seriously acute problems go when no one else can help. Families are often desperate - like us - and grateful for help. It's also a place of novel and slightly unusual treatments, doctors are at the cutting edge of paediatric medicine and are always trying to push boundaries to help children. We embraced the plan - and the early results it brought.
