Since Caitlyn and Clara were born we knew something wasn’t quite right. Clara would get excema, Caitlyn had reflux and they never settled. It took me 6 months begging the GPs but eventually I got a referral to Leeds General Infirmary. Within minutes of them being seen by the paediatrician they were diagnosed with a milk protein intolerance and were given prescription formula.
Things were fine until we started to wean them. They suffered from chronic diarrhoea and were constantly sent home from the childminder as a result. Caitlyn was growing slowing and wasn’t well much of the time. She was tired, grey and permanently bloated – Clara was better though not by much. We kept begging the paediatrician for help and for over a year was told it was “just toddler diarrhoea”. The girls were discharged and were left to deal with it – Cait still bowel incontinent. One day I lost it. Cait had been sent home from the childminder yet again and I rang the doctors demanding an appointment. Just before we went in Caitlyn exploded everywhere. The GP saw it and the colour in her face drained. She helped me to clean Cait up and referred her straight to Harrogate.
Harrogate were great, The consultant agreed that this was a serious problem. Cait was just weeks away from starting nursery and was effectively incontinent. Elemental diets were discussed and food diaries started. We were referred to a dietician and I felt for the first time we were being listened to. After a few weeks we hit a breakthrough and realised that it was chicken causing an issue. The moment we cut out chicken and eggs the diarrhoea stopped and so did the accidents. She grew 4cm in 6 months and is so much happier. Other than a bit of constipation, reflux and bloating Caitlyn is doing really really well.
Clara was referred to a general clinic at the same hospital however and I’m not impressed. We were fobbed off with them saying there was nothing that they can do other than work out what’s causing the reaction and excluding it and I don’t need their help for that. I kind of see the point but having a name, a formal diagnosis, would help us explain to people what is going on.
Part of me is angry and dreads to think what long term damage has been caused by the original consultant fobbing us off. I fear that they might become intolerant to more foods and end up really poorly as a result and I fear that one day they will eat something which will make them very very poorly. The trouble is we don’t have a firm diagnosis – only a suspicion that it’s a rare condition and the only consultant who understood has retired. We don’t know how much if any damage has been done but they only way of doing that is surgery which is pointless when things are under control with diet.
I have questions but I’m not sure who to ask when it’s only a suspicion. Do I ask for a referral elsewhere and try and get my questions answered? Do I hope the new consultant knows enough not to fob us off again. It’s so hard 😦