Stories & News Stories Parents' stories Clare's story I don’t think people realise just how much stress and strain is put on a family when a child has problems with something so simple as going to the toilet. ERIC’s helpline gave me amazing support whilst dealing with Euan’s constipation. Although we are not completely through it, we are finally seeing some light at the end of the tunnel. Bowel problems misdiagnosed We first noticed problems with Euan‘s toileting when he was about two and half years old; we struggled to potty train him and he seemed to have constant diarrhoea. With no signs of improvement we went to the GP who referred Euan to a Paediatrician. Euan was first diagnosed with ‘toddler diarrhoea’; a ‘diagnosis of exception’, after test results returned nothing. The advice from the paediatrician was to push a low fibre high carbohydrate diet. We were told he would eventually grow out of it and no follow up appointments would be required. Euan continued to have very loose stools. He would often have three accidents a day. I had to send him to nursery with bags of spare clothes. We had constant battles with the nursery about whether he was fit and well enough to attend. We spent weekends worried about taking trips away from the house just in case he had an accident. After being told again and again by the Paediatrician to ‘be patient he will grow out of it by the time he is five’, we were frustrated and angry and felt we needed to take additional action. Finding the information myself I independently started logging Euan‘s diet and bowel movements in an attempt to see any correlation, but it highlighted nothing. It was at the point when one of the nursery staff said to me: ‘Aren’t you going to do something about him not being able to go to the toilet? They won’t let him go to school like this’ that I went back to the GP and insisted on a referral for a second opinion. I hunted out the name of a Consultant Paediatric Gastroenterologist who I hoped would give us the answers we desperately needed. It was only at this point - after nearly two years - that Euan was finally correctly diagnosed with chronic constipation. The diarrhoea was ‘overflow soiling’ as the liquid stool passed round his blocked bowel. Although now with a correct diagnosis, the Paediatrician prescribed a normal diet and suppositories, which I later found out to be an incorrect method of treatment, especially for a child of Euan‘s age. The suppositories removed stools in the rectum but didn't clear the backlog of stool in the bowel. Unknowingly at the time we continued to use them, giving us some improvement (less accidents) as the suppository was forcing Euan to have a bowel movement, but it did not completely solve the problem and, even worse, the application of the suppositories was causing him a great deal of distress. Reaching an all time low Only months away from Euan starting school we felt completely let down by the medical support we had received. At four and half Euan was becoming aware and embarrassed that soiling himself was not normal. As a family we reached an all time low when Euan pinched one of the nappies belonging to his newly born brother and I found him locked in the toilet crying trying to put on the nappy. It broke my heart. I decided one last desperate attempt to appeal to a different GP for help. The GP prescribed Movicol (one sachet per day) and again we saw a reduction in accidents but no resolution. Support and reassurance from ERIC’s helpline It was then in my desperate attempt of trawling the internet to find more information on Euan‘s condition, that I stumbled on the ERIC website and immediately rang the helpline to find Sharron on the other end of the phone. Sharron patiently listened as I recounted the full story, sometimes in tears. What I initially found so reassuring was that Sharron recognised everything I was telling her, she had heard it all before and I was not alone. Sharron reassured me that we were now on the right medication but needed to increase the dose to clear the blockage of poo in Euan‘s bowel. It took two weeks of increasing the Movicol dose to eight sachets a per day to clear the impaction in Euan‘s bowel until his stools became liquid. I have never seen so much poo come from one child over this period and it must have been so much of a relief for him to be cleared out. It pains me even now to think about how much poo he had trapped inside of him, which is a result of misdiagnosis and incorrect treatment. Sharron was on daily support during the disimpaction, we were in touch every morning to discuss Euan‘s progress and the course of action for that day. Once complete we agreed on the steps I would take to get to a maintenance dose of laxatives. It took two months to fine tune the dosage to keep Euan regular. I occasionally checked in with Sharron to provide a status report and get some reassurance we were still on the right track. Light at the end of the tunnel The extent of Euan‘s constipation had left his bowel stretched resulting in frequent accidents. It is only in the last few weeks that we have seen some marked improvement, where Euan has only had one accident over a two week period (a first for us in five years!). I anticipate that we will be on Movicol for some time, but at least we are starting to get his condition under control. I can’t express how grateful I was to stumble across the ERIC website. The helpline and Sharron in particular have been my saviour. We would not be in the position we are in today without the knowledge and support Sharron gave me. We now have a content, happy, nearly cured little boy. THANK YOU! Clare and Euan were interviewed for BBC Points West when ERIC was visited by the Princess Royal in 2016. Watch the interview here: Read more parent's stories.