Help and advice

[Ckusper]

Hi all, my son is 11 years old and is really struggling at the moment. Last March I noticed he was soiling himself and hiding his underpants. Took him to the GP who started him on movicoo but nothing was happening so added lactalose. Same nothing happened, I have done every diet going to see if he is intolerant/allergic etc but it was always the same outcome. Gone back to the GP who referred me to the pediatrics team who put him on 10 sachets a day and 2 shots of lactalose, again nothing changed so they advised me to go back to my GP. I had enough so took him to A&E, they says they will submit a referral to the consultant but didn't! Managed to get an appointment last week with a consultant who told me they would refer to a new constipation clinic. I got out of work to an email to say the new clinic isn't operating yet and advised me to go back to my GP. My GP is off sick so another GP has now approved a blood test. I feel its now more psychological with my child, he wears pull ups to school and is really anxious to grt changed incase others question his bag etc. So he would rather sit in it and wait until home time to get showered. He goes to high school this year and I'm on edge thinking he is going to get bullied if he smells. He's now back on movicol, 2 sachets a day and the doctor advised I can increase to 4. I feel I'm banging my head and going round in circles. Tempted to go private as I feel I'm getting messed around, my son has been seen 3 times in a year and professionals have just pressed him stomach and said he's constipated, here is some movicol. Any advice is welcome and sorry for the long post xx

[Yaleamanda]

It sounds like you need to disimpact him. You need to work upto the maximum dose for their age until you reach watery stools with no lumps consistently for three days before you start reducing the doses down extremely slowly ie one sachet every three days until you reach a suitable maintenance dose to remain on.

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Hi. I’m so sorry to hear of your son’s issues, it’s such an awkward age for them to be open about this type of medical problem. We’ve had a similar experience to you (my daughter is 13) and all happened during lockdown when it was virtually impossible to get to see a consultant. We got up to 16 sachets a day and nothing.

Finally we paid to see a private consultant as I was worried about the mental impact on her dealing with it every day. She was given an ultrasound (clear) and X Ray within a week of her appointment which showed she was impacted. She was given a weekend prescription of 2 days of Picolax and Senna to clear her out.

This worked and gave her a couple of months of being clear with no issues. Her maintenance meds were 4 sachets Movicol and 15ml Picosulphate.

Sadly being clear didn’t last and the issues started up again, she’s now in the NHS system and we have a great consultant who is taking lots of time and care with her. An X ray last week shows she is backed up again and she was given another 2 day regime of Klean Prep this time. We have a follow up appt next week where she may be X rayed again as the soiling is better but not 100% which it really should be if she has had a full clear out.

What I find most baffling is why everyone just wants to deal with the symptoms and not the root cause. Little point clearing out if the problem keeps coming back…

So, long answer to your question (!) but I would say private is helpful only in that you’ll get tests and results more quickly which rule out serious issues like coeliac, crohns, colitis etc. and x rays help you to see the extent of the problem.

Full blood tests also useful for peace of mind.

After this the meds seem to be similar whoever you see and I won’t be putting her back on high doses of laxatives again when a year of them has not proved to be helpful.

I do hope you get somewhere soon as it’s awful to not be able to help them and frustrating to feel you’re not making any progress. Take care…