Alix and her son Charlie

Charlie is our eldest of three children. We attempted to toilet train him at two and a half but he clearly wasn’t ready and so tried again three months later. Within a couple of weeks, he was completely dry during the day and I recall very few accidents from that point onwards including when he was away from us and away from home. Being clean, however, was a completely different story.

Spiderman pants to the rescue? 

At the beginning, we weren’t too concerned. Lots of friends who had gone through the process already, spoke of experiences where their children had done exactly the same and then there was a moment of epiphany where the “problem” was solved. This ranged from involving Charlie in choosing particular pants because surely he wouldn’t want to poo on Spiderman?! To, reward systems on short term and long term bases. We bought books; we introduced regular sitting; we praised; we got cross, nothing worked.

Nursery staff lacked experience & knowledge 

It became quite frustrating as, at the time, Charlie was attending a day nursery at the same time as his younger sister who was still in nappies at the time. The nursery staff lacked experience and/or knowledge to see it as anything other than Charlie being stubborn, even putting it down to him soiling to gain attention from us as he supposedly could see that his younger sister got this every time we changed her nappy. We never bought into this and knew this was certainly not the case.

Trial and error 

Several months after toilet training, we began a series of return visits to the GP to get advice on what we could do to help Charlie. We were prescribed Movicol; given advice on intake of fluids and fruit and repeatedly sent away. Looking back, although the advice was correct, it was never specific enough to progress with the situation we were in. For example, at the beginning, we put a sachet of Movicol in a large container of drink rather than measuring out the specific amount directed. We assumed the amount of fluids Charlie was taking on was enough. However, to make a real difference, it needed to be five times what he was drinking daily. And it was only from seeing a range of GPs who each contributed their personal advice as well as looking on the ERIC website at the resource materials and reading the forums, that we began to get a clearer picture of how accurately we needed to be dealing with the issue of soiling.

Seeing soiling as a medical issue

It was only when Charlie’s younger sister was toilet trained successfully that we decided the soiling was a medical issue rather than something deliberate and from this point on we pushed the GP to refer us to a paediatrician which was done at the end of Charlie’s first year of school. Through an x-ray, it was confirmed that Charlie had severe and chronic constipation to the extent that he had damaged nerve endings in his rectum and therefore messages were no longer being sent to his brain to tell him when to go. We then began our current journey of clearing the back log of waste matter and hopefully begin to repair the damage to the nerves that had been caused by the prolonged constipation.

Slow and steady progress

During the past several months, we have seen progress, however, it can very much be described as two steps forward and one step back! We have completed two disimpaction regimes which haven’t been as successful as I would have assumed. We have also introduced a dairy free diet which has had an impact and has contributed to the reduction in constipation. Every eight weeks we see a specialist paediatrician who we update on the current situation and he prescribes laxatives and advice to suit. We also see a specialist team of nurses every four months and have access to a helpline number. The great news is we now have a few days in a row where we don’t have any soiling and Charlie is initiating going to the toilet. It helps that he is older and understands what we are saying to him and why we are saying it. And he knows how happy we are when he manages to do a poo on the loo.

Help from ERIC and health professionals 

It has been a stressful, frustrating and upsetting time. And we have only realised how worried we have been now the situation is more positive. What has helped the most is educating ourselves using the ERIC website and listening to a range of professionals to thoroughly understand medically what is happening and therefore aiding us in dealing with it appropriately as adults and how we work with Charlie to achieve success too.

If you'd like to share your story, please contact Alina: [email protected]