frustrated. Go private?

[c128f]

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.

[ERIC-Charity Partner]

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.

eric.org.uk/how-to-use-macr...

best wishes, ERIC

[MindfulSquirrel]

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.

[14crosstitch14]

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.