Lucinda and Leo

Leo is 13 years old and profoundly autistic. Like a lot of children with autism he has bowel problems which led to a huge amount of soiling. It felt that we would take a step forward then a step back and we couldn’t understand why.

Regression

He was in nappies until he was about 12 and then went through a short time, with the support of a very good keyworker at school using a system of rewards, that he improved. However, when that keyworker left he regressed massively again. He didn’t really care about being clean or if he was in nappies or not so this made it harder. It hit the point where we were getting absolutely no support from this from anyone - doctors, school nurse, nutritionists or care staff. Leo was soiling about 10 times per day.

Stumbling across ERIC

In utter despair I started searching up on Google to try to work out what the problem was and I stumbled across a post by ERIC about faecal impaction and that it can lead to a large amount of soiling as a side effect of massive constipation. This seemed to resonate with Leo’s symptoms perfectly. I rang the helpline and got through to Natalie who was wonderfully kind and supportive, and really understood how stressed we all were about the situation.

Laxatives to the rescue 

She explained how the NICE guidelines on treating childhood constipation recommend a high dosage of Movicol is given initially before reducing. She also said how important it would be to keep a maintenance dose going for the foreseeable future while his bowel got back to normal. We also discussed using rewards to incentivise Leo to use the loo. One of the problems I believe was that due to the severe constipation it was very sore for Leo to do a poo on the loo, and she said that Movicol would really help this.

Following a 'clear out' regime

We followed their advice to the letter. Over 10 days we gave Leo a high dose of Movicol until he showed signs that the faecal impaction was overcome (we used ERIC's Parent's Guide to Disimpaction) and reduced the dose slowly. We also introduced a two-fold reward system – we put a small pad in Leo’s pants and if it was clean we gave him a sweet and if he used the loo we gave him a sweet. No punishments if his pad wasn’t clean, just a change and then start again. These two incentives really helped Leo to stay motivated.

Maintenance miracles 

A month later and Leo is on one small dose of Movicol per day and is completely and utterly clean and using the loo amazingly. The maintenance dose of Movicol helps enormously as it means it doesn’t hurt when Leo uses the loo, and he is so happy when he has used the loo! We had used Movicol on a short term basis in the past but no one had every told us we could put Leo on a maintenance dose and that it has no side effects and is much safer long term than frequent constipation. Also, now we have established such a good toileting routine with Leo, most of the time we don’t need to use any rewards, Leo just forgets to ask for a sweet, and he is so confident at using the loo we don’t even use pads anymore - but rewards were an excellent way of getting a good toileting routine in place.

So long nappies!  

I am certain that after years of stress and worry we have absolutely cracked this once and for all. Without ERIC Leo would without doubt have had to go back in to nappies. With their support, nappies are history!! We needed ERIC so much when we stumbled across them, and their help, knowledge, support and kindness was exceptional – thank you from all our family! 

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