We had reached the end of our patience with the local hospitals and doctors. M had started school the previous September and was doing well, having managed to exceed all expectations and avoid any embarrassing toileting “accidents” during school hours. Things at home however, were not getting any easier.
We had now suffered disrupted nights for 5 years thanks to M’s inability to switch off and fall asleep until past 11pm and he often woke once or twice a night and ended up in our bed. Whilst not every night was sleepless, it certainly felt that way and our sheer exhaustion was taking its toll on the whole family.
Every day was a relentless routine of regularly cleaning and changing M as he suffered from chronic diarrhoea and still hadn’t cracked full toilet training. On the best days, we had to change him 3 times, on his worst, 5 or 6 times wasn’t unusual. We had even managed to blow the motherboard of our washing machine after doing load after load of dirty washing on an almost daily basis.
He continued to eat huge amounts, complained of feeling constantly hungry and relished the fact that he was the only one of the family able to eat everything he wanted – G was still wheat, dairy and oats free, Daddy was mildly lactose-intolerant and I had discovered an arch-nemesis in the form of the simple spud! Meal-times were challenging as I cooked to manage every dietary need, but I look back on those days with fondness now as cooking daily has become even more…well…challenging.
We were also struggling with manic mood swings and temper tantrums that rocked the house when something went wrong. We now understand that M was frustrated with his inability to manage his toileting and this tipped over into every other aspect of his life, but at the time it just seemed like another behaviour that needed to be managed. And no, the old favourite of the star chart, recommended to us by every medic who’s path we crossed, did not help at all.
By May 2011, M had seen or been referred to:
- 5 consultants
- at least 4 registrars
- 2 hospitals
- 2 GPs
- 1 school nurse
- 1 continence clinic
- 1 CAMHS nurse
- and numerous other medical staff along the way
Finally at my wit’s end and obviously showing signs of strain, I sat in our GP’s consulting room and asked where we could turn to next. My mother’s instinct was still full force and despite the now numerous diagnoses of toddler tummy and the reassurances that M would grow out of it all, I knew categorically that he wasn’t getting any better and that we were now 5 years on from the initial set of problems. I will be forever grateful to this individual who had absolute sympathy for our plight and offered to refer us to anyone, anywhere in the country.
With this in mind, we started to investigate where M could go in search of some answers and were pointed in the direction of Great Ormond Street Hospital (GOSH) in London. My Mum had been suggesting that we should go to them for a long time, but I had always ignored this advice, believing that whilst I knew something was wrong, it wasn’t serious enough to warrant a visit to those hallowed grounds. However, every other avenue open to us had been fully explored and when, at our final visit to the local Children’s Hospital, the registrar refused to perform an investigative colonoscopy on the grounds that such invasive intervention was too traumatic and unnecessary in M’s case, I knew we had to take a chance.
Mike contacted GOSH and asked for a name of a gastro-specialist that our GP could refer us to. We had to pay for the benefit of a private referral as a NHS referral could only be done through our local hospital, who still held there was nothing wrong, but we believed that this was the only way to get the answers our family so desperately needed.