Great improvements

I posted a while ago about my son who is 7 this month and was having poo and wee accidents he was also hiding under tables and going rigid which I was concerned was pain but after advice from yourselves I think was probably withholding.

So since then we have seen a consultant and gone back onto movicol. in the last month/6 weeks I feel like a switch has been turned on in his brain and he hasn't had any accidents at all! He seems to know when he needs to go, he's not refusing to go to the toilet we don't have to remind him and he's very proud of himself for getting the hang of it.

What I'm wondering is should we cancel our upcoming appointments assuming that we can now manage this on our own or go along and get the consultant to sign him off. It seems a waste of NHS resource to go along but I don't know whether I should go to make sure we don't regress again. My son really doesn't want to go as I think he believes there's no problem now.

4 Replies

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  • I think you should go. They need to hear success stories to better understand the issues themselves. In the spirit of 'closure' I think you should go. Maybe they will question you and retain that knowledge for future patients.

  • Same thing happened to us. I kept our appointment with consultant so I could explain my daughters success and ask for advice as to what to do if she had a relapse, and get to get any other advice. Our consultant discharged her but said he would be very happy to see her again if she experienced problems again. I think getting the official discharge is a good thing especially should you need to go back again.

    Big congratulations with the improvements, it's great when you finally turn a corner.

    X

  • You should go if only to get sign off if all is now well. If you fail to turn up to appointments you will get kicked out of the system. X

  • Yes, still go. We have had similar breakthrough in the past 3 weeks. Finally had my 7 year old referred to a specialist team at York hospital. Wish we had been taken seriously 3 years ago. I have had so various advice from many gps. The last straw was being told by a gp that my son may just suffer until a teenager. Not really anything you can do. No magic cure being referred! I contacted the school nursing my team who wrote a brilliant letter to the gp and told them what ridiculous advice to give. We were referred, told to do disimpaction regime over half term. He did this really well on laxido. 3 weeks on it is like a weight has been lifted. He is going by himself daily on 4 sachets.

    His nurse called last week for a progres report. Said it makes her job worthwhile hearing great news. We have follow up appt in 2 weeks.

    Lovely to hear other people having great news too.

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