New to the group and looking for advice

[daniellejarrett2017]

Hi

My son was 5 in March and we have been dealing with issues since he was 6 months old. Hes always had issues with going to the toilet and would prefer to stand to go instead of sitting down. Hes been prescribed both Movicol and Laxido in the past and both resulted in him having accidents all day every day. Hes also a very fussy eater and has to sniff everything.

Back before xmas I took him off Laxido because it go to the point where we were being called to the school to clean him and felt like all we were doing was cleaning up mess and changing his pants. I would change his dosage all the time to try and control what was happening but nothing was ever right. Taking him off improved but he would still prefer to stand to go to toilet and would still have a few accidents but not as many.

We have recently heard from the continence nurse and gone through the disimpaction process. He cleared out at 8 sachets and when we took him back down we had a period of 2 weeks where he went like clock work and would go to the toilet- we thought we had nailed it. Long story short we hadnt and we are now back to loads of accidents, getting sore and always being sat in the toilet. The nurse called again this week and told us to start the sodium pico sulfate with him as hes been on half a sachet for a week with no improvement. Now hes going twice a day but its diahorrea instead. I've taken out the Laxido to see if that helps and lowered the dosage to 2mls to see if that will help but I'm at a loss. I dont know what else to do. I've tried everything with him. I've spent a fortune on white board pens to try and get him to enjoy the toilet, a gift box to reward him when he does go. I've got him eating brown bread which is new for him and hes enjoying it but that it's for anything that would help with his bowels.

I just dont know what else to do now.

Hope someone can guide me and tell me it gets better

[Robinia]

From what you’ve said in your post, my assumption would be that the disimpaction worked but then the maintenance dose following on from the disimpaction was too low. If I were you I would disimpact again and then come down from disimpaction dose very gradually and use the picasulphate (if that’s what you’ve been prescribed) alongside the movicol. Better to have a higher maintenance dose to start with and reduce it down gradually. When my son was little I found 3 sachets daily about right.

[daniellejarrett2017 in reply to Robinia]

Do you think thay would work? This morning without the Laxido and just the pico sulfate, hes had the biggest explosion ever. It's the same as if he was on 8 sachets a day again.

[Robinia in reply to daniellejarrett2017]

In that case you can see how he goes on just picasulphate if you prefer. The picasulphate is a stimulant and the laxido is a softener.

From my (bitter) experience the key for my son has been getting him fully disimpacted and then finding the magic maintenance dose (still struggling with this age 11).

Maybe see how things go on the current regime for a few days and then review progress.

You can always disimpact in a week or two’s time if you don’t think there is sustained progress