Going backwards. PLEASE Help.

[Frustratedmum1]

My son is going backwards again. I cant get in touch with any of his medical professionals to ask for advice.

We were told he needed to consume 1700ml of liquid a day. Which we are now achieving. However we have now got a weeing issue aswell which seems excess. (I have never had this before, always been poo accidents)You can't tell if he is blocking up because you don't know if it is the amount of fluid he is consuming.

He is constantly going for wees. His pull ups are at soaking point and now it is causing him to become very sore on his legs and around his private parts. Any ideas what i should do?

[Robinia]

Possibly he’s constipated and it’s pressing on his bladder. What is his poo like?

[Frustratedmum1 in reply to Robinia]

I think he is blocking back up slowly. The signs are rearing their head again. I thought we were winning as we got him to 3 movicol and 3ml of Piculate. His poos are a 4-5. He goes every day a tidy amount. But he seems to have to go at least twice a day very good amounts to stay unblocked. But you feel people don't believe you.

I don't know wether I should reduce the fluid intake and see if I'm still getting excessive weeing. School are concerned for him as we are going into warmer weather and he is becoming increasingly sore and possibly smelling issues. At the moment they are encouraging him to change at a break time aswell as lunch. They allow him to go to the toilet when he wants and they reckon it is that frequent and he is still soaking.

I'm wondering if I need to put the Piculate up again but by how much as i have already increased by 1.5ml. Sorry about the essay. Just don't want to go back to the place we were 12 months ago.

[Robinia in reply to Frustratedmum1]

If it were me I would probably do a movicol disimpaction next week at the start of the Easter holidays. That way you will know he is definitely clear as you can keep going until you get to brown water. Then in the second week of the Easter holidays you can work on getting the maintenance dose right. If he is not impacted you will know coz you will get to brown water much sooner. Might seem drastic but based on my own experience of horrendous problems I always tend to assume they are constipated!!

[Frustratedmum1 in reply to Robinia]

Thank you

[Mishamoo2 in reply to Frustratedmum1]

I thought my son was blocked again when accidents increased again after an illness. Before doing a disimpaction I did a sweet corn test. It enables me to check motility how quickly it comes through. He wasn’t blocked so I just played about with movicol dose again. I found disimpation quite traumatic for both of us. Good luck.

[Frustratedmum1 in reply to Mishamoo2]

Thank you