my daughter is now 8 and has been on Laxido for 5 years. We finally managed to wean her off them but she suffered excruciating wind pains so I took the decision to put her back on a low dose, every other day. My hospital appointments have been every 6 or 12 months with a big gap during covid.
The soiling has returned with force and I feel back at square one. I have expressed my frustration to the doctor who’s honesty I appreciated when she told me that scans don’t show anything and we won’t be referred unless she is reliant on the Laxido again and we keep a diary. The last 5 years don’t count 🤷♀️
I have disimpacted her before but only from advice within this group, never advised by the doctor but she was supportive when I told her I had done it.
Is it worth me looking at a private consultation and can anyone recommend anyone in the north west?
Any advice much appreciated.
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c128f
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Dear c128f , have you tried contacting our Helpline? eric.org.uk/helpline/ . You can call Monday - Thursday between 10am-2pm or complete a web enquiry form on the page below for an email response.
We have a team of expert advisors who would be happy to help you.
One thing worth noting is that advice regarding macrogol laxatives (laxido, movicol or cosmocol) is to give a daily dose rather than every other day. So it would be better to give half a sachet every day than one sachet every other day.
This sounds like a nightmare for you. We were in a situation where we were completely relying on the ERIC charity (who are absolutely brilliant BTW, definitely email/call them as advised) because we couldn't get on the NHS waiting list. It was a different issue to your daughter as my son was wetting. He had absolutely no control of his bladder at 8 years old, which was crippling for him so we made the decision to go private. We are in Kent so I'm afraid I don't have any recommendations for the North West - but I can say this is the best decision we have made.
Obviously it completely depends on your financial situation as it's very costly but for us it was worth it. The main benefit is that we can have an appointment whenever we want. It has meant that we've been able to sort the problem very quickly as we've had 3 appointments and a test within 3 months of making the decision. So a diagnosis and two changes of medication and we are well on the road to being sorted. Good luck
It’s not always easy to find a consultant doctor in the private sector- when I looked in our area it turned out it was the same doctors who ran the NHS clinics. One had just retired and one had such a long waiting list they had stopped taking referrals.
We’re in a similarish position with my daughter. She is about to turn 8, isn’t soiling but on increasingly high doses of movicol to prevent it and there’s no real behavioural holding that I can see. I’m increasingly wondering about some underlying gut issue or even something like hEDS, and yes it’s irritating that the GPs aren’t seeming to consider this seriously.
Toilet routine, to help reduce the soiling. 6/8 times a day. Mainly before/after meals. Try dulcolax it work and its cheapest i'v found is savers. Prunes/figs/raisins/grapes a more natural way may help. I had alexa on by the bathroom and fidget toy is only for the toilet for relaxing, keep their mind off the problem. Really helped took years.
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Very frustrated mum.
2.5yr old daughter possibly withholding poop
5 year old terrified of going for a poo 
Nightn nappy or not for my 7yr old
