constipation - who to see after continence nurse/paeds

[hazeyjane]

Ds is nearly 7, he has complex health meeds and disabilities. He is under the paediatric service and see a continence nurse for his problems with toileting and constipation.

He has been on movicol for over 3 years, and has been in a cycle of..... no poo for a week....hard woodchip like bits for a week (with stomach pain and horrendous smell).... Large amounts of thick slurry for a week......back to no poo for a week. Ad infinitum.

He gets really bad stomach ache, bloating, gas, a smell like mothballs. His weight is dropping, not huge amounts, but it remained static for a while, and he has recently gone down a centile (to 9th centile) he looks pale, dark eyed and is often very tired.

His diet is restricted due to sensory issues (he see a dietician), so I am aware his diet doesn't help his constipation, it is also very difficult to get him to drink enough. He was prescribed soluble fibre, but it is difficult to get it into him, he refuses anything like sennakot. He also has reflux, for which he is prescribed lansoprazole.

We just seem to be going in circles, his continence nurse was due to see him last month, but cancelled due to illness and no replacement appointment has been made. His paed says he needs to stick to movicol and we need to sit him on a toilet daily (he is in nappies) - rather ignoring the fact that he is extremely resistant to going into the toilet and trying to get him to sit on it is similar to wrestling an angry tiger. The continence nurse disagrees with this advice and says until ds is doing one normal poo a day there is no point in trying to get into a toilet routine and broach the nappies.

I feel like we are trapped in a cycle and the advice we are being given is getting us nowhere. In the middle of it all is poor ds. I asked our gp for a referral to a paediatric gastroenterologist, and in a long roundabout referral system have ended up with an appointment with his normal paed!

I know this is like the illiad of posts about poo, but honestly I don't know what to do next - any ideas of who we could turn to?

I'm a Movicol veteran of five years (although my child has no health issues aside from sluggish bowels) and what's jumping out from your post is that the dosage just isn't right. This cycle of no poo/hard poo/slurry isn't right. What is the dosage right now?

Has anyone ever mentioned the disimpaction regime to you? It involves gradually higher doses every day, up to 12 sachets, before gradually reducing. It's grim but essential to properly clear out a chronically backed up gut. Then you can start from scratch with whatever mainentance dose produces a soft stool every day. For my child it's three sachets per day.

Thankyou for replying. When he started we tried the disimpaction dose, although we couldn't get up to 12 sachets. We would get to a point where he would but cleared out and then ds would be ill or in hospital and it would go back. Because of his reluctance to drink I am aware that getting enough water and movicol into him every day is really really hard (especially when school creates a fuss about him having it at school). At the moment he is on 4 sachets a day, we sometimes get up to 6.

It's so difficult when they won't drink. My DD only drinks if I nag, and if I forget (which is often) she would go most of the day without drinking a thing.

I do think disimpaction is the way to go though, unfortunately, because what you're experiencing right now sounds like a chronically impacted bowel. You could always ask for an x ray, to accurately assess what his gut looks like and how backed up it is.

Why are school making a fuss about him having Movicol at school? They really should be able to facilitate it. I take it it's a SN school? Is there a school nurse you could talk to?

Really agree with HeyRoly - the pattern you describe very much sounds like he hasn't achieved a clear out. So the rectum will still be stretched up, with overflow poo coming past hard rocks, poor rectal muscle tone, and altered sensation. I'd be thinking about working up through disimpaction regime until at least 3 days of absolutely shed loads of gravy-consistency poo, then reducing gradually to aim for daily scrambled egg consistency.

Always difficult with sensory issues, as can be hard to get in the big doses of movicol, but very hard to get anywhere without giving enough, as the rectum can't recover unless all rocks are emptied out. Incidentally, has he ever had bloods? If falling down the centile chart, can just be worth ruling out coeliac.

DD was like this, impacted to her stomach and so throwing up food as no space to go anywhere, she ended up having a 5 day stay in hospital, an enema followed by increasing dosage of Movicol overseen by nurses and then gradually decreased, she was also a reluctant drinker although better now.

What kind of foods does he eat? Could you hide the movicol in any of that? Things like jelly, ice lollies or the milk from his cereal or yoghurts? Does he loke ice in his drinks? If he does freeze some water and movicol as ice cubes? If you think he might notice a whole sachet even put a quarter of a sachet in something to try it? It does sound like he needs more movicol but its so hard trting to do it, especially if they have complex needs as well.

Good point iwill

A doctor once told me that you could make Movicol up in a very small amount of water (rather than the 62.5ml advised). I would mix it literally in an eggcup, stir well and leave to dissolve. It would end up looking kind of syrupy. Then you can attempt to hide it in whatever you like.