Consitpation clinic...anyone been?

[lorneylou]

Hi all,

Just hoping for some advice/reassurance really as I am at the end of my tether!
DD, 3.5 has suffered from constipation from when she started on solids really, it had ranged from having to push a bit hard to full blown screaming, sweating, shaking and holding in for hours...it kills me to watch and I constantly fear something is seriously wrong. There's a part of me too that just feels like screaming .... 'Just push it out and it will all be over!!!!'. I'm so so tired of this (its been nearly 3 years now) and feel horrendously guilty. :(

Anyway...we have an appointment at the nurse led constipation clinic at the local hospital tomorrow after waiting for nearly a year, I can't wait to go and I'm hoping that they will be able to give us some great advice that will help us put an end to all this.

However, the last week the constipation has gotten really bad as we have started potty training and DD has started holding her poo in again.
We have been struggling with the meds that DD is on for a while now and now they are just not doing the job.
I have some Movicol at home which was prescribed ages ago but that we never used because then, she was coping ok but I am positive that she needs something more now.

So I have some questions for anyone who's DC's have been to a constipation clinic before

Can the nurses there prescribe meds or advise on dosages or do we have to wait to our next Paed appointment (June)?

Can they help with the psychological aspect of all of this...the fear of the toilet/holding in or can/do they put you in touch with someone who can?

Are they likely to give us regular appointments or advise us of any kind of help we can get between appointments? (DD has really bad episodes and our GP is worse than useless)

Are they likely to examine her? I am pretty convinced after researching for days that she is impacted and has been for a while. Despite mentioning this to GP and Pediatrician, no one has ever examined her belly or anything else, just said that she looks bloated. I'm also convinced that her bowel has stretched too, her poos are absolutely huge!!

Sorry for rambling on so much or if my questions seem stupid, I am just hoping so hard that tomorrow will finally result in some proper help but part of me is so scared they will be as useless as out GP :(

Any advice or experience very very welcome.

My.niece suffered from this years ago so how they do it now might have changed.
The nurses couldn't give anything more or adjust doses without a doctor but they access that easily for you.
They will examine and manually evacuate if needed and will continue to do it regularly if necessary. They'll also advise on diet, exercise ect.
They are good with the mental side but honestly with my niece it was someone having to manually help her do her business that made her sort it out for herself!

Jokers, that sounds awful for your niece! We are not at that point yet but really wanting some help before that happens. So glad to hear she has sorted it all out now!

It was awful at the time but now she's really conscious of what she eats, she's the only health aware 9yr old I know!
The clinic was bad but the lessons they teach are brilliant. Hopefully you'll just get the lessons on health

Start using the Movicol.

It's what all toddlers/children with chronic constipation are treated with. I'm amazed you haven't been using not for years already! My DD is 2.7 and has been on it since she was 7 months old. Poor kid can't poo without it. But it works, so I'm prepared to be on it for as long as it takes for her sluggish bowel to improve.

*using it for years already

Forgot to add, Movicol is used to treat faecal impaction as well, although you'll probably need to be advised when it comes to the dosage and for how long you keep it up for. Yes, her bowel probably has stretched. I'm amazed she's been untreated for so many years, tbh.

DD used to take movicol x3 per day and docusate plus Lactulose sand even with all that I think age was what finally caused her come out the other side, the embarrassment factor plus having the ability to understand what to do and why to do it. She was about 6 when things started to improve. You have my sympathies.

Thanks for the advice everyone. DD is on Lactulose and Docusate.
She has been on the Lactulose since she was about 1 and the Docusate only for about 6 months...it does get the poo out but it is very very painful.
When the doctor first gave me the Movicol she said that she could become dependent on it, but it was 'for the best' really. I disagreed.

However since the problem seems to be getting worse, I've done alot of research on the Movicol and it seems to be the very thing she needs.
I'm just not sure of the dosage now as she said at the time to give her 2 sachets and then one a day after that...but most peoples DC seem to need a lot more for the initial clear out.

I think she has not had much help because my GP seemed to be convinced it was a diet problem. I don't see why as her diet is really good as I'm careful about it...I even kept a food diary and showed it to the GP but she said I must have forgot to note down 'the usual rubbish that all kids eat' and that is whats causing the problem! I do agree DD needs to drink a lot more than she does though and I'm working at that.

Hoping for a miracle at this clinic today :(

I was told the opposite about Movicol, that it's not something DD is likely to become dependent on.

But, tbh, I'd rather she was dependent on Movicol than suffering and in pain constantly.

As for dosage, if you really think she's impacted then I would start with at least four sachets per day (I think you can go up to eight). My DD is on two per day just to maintain regularity.

Hope it's gone well for you at the clinic.

Lactulose and docusate are really very mild laxatives. In the time your DD has been constipated her bowel will have stretched so even in the times you thought she was going OK, she probably was still constipated.

Movicol is the main treatment for paediatric constipation - DD needs it daily and for months, not just until she gets going again, but ages and ages so allow her bowel to unstretch back to a normal size.

All went well I think, nurse was really nice and understanding. Finally someone who has an idea of how much of an impact this has on DD's life!

She recommended we start the Movicol, 2 sachets today and then up to 4 until she has 'gravy poo' and keep this going for 4 days until she is cleared out. Then reduce by half sachets until we are getting good poos every day.

Also said to make sure she gets 8 child size cups of fluids a day and we went through DD's diet to check fiber is ok.

She also printed me out some reward charts and plans to follow and gave me some ideas to help DD get over the fear of going. Agreed that she is most probably impacted and is always constipated even though she is pooing, just like you said Kundry.

So next appointment in 6 months and she has given me her number just incase we have a problem. DD started acting up at the hospital, she has a poo on the way and is desperately holding it in. Managed to get a little food and one sachet into her tonight but she has gone to bed exhausted with a very sore stomach. Hopefully after the 4 doses tomorrow things will start moving.

Thanks again to everyone who posted, it's good to know we are not alone but so sad to hear that so many children go through this :(

We have similar (though not quite so extreme) issues with our DS 3.5. He has had problems since 3 weeks old and now with daily movicol poos daily but totally refuses to poo on a loo (will only poo in his nappy)...have been meaning to try and arrange an appt with the clinic but I know it has a huge wait and wasn't sure how helpful they would be!

They were better than i thought they would be FeelingHip. We were speaking to the nurse for a good hour and a half.
I did mention that we had been waiting to see her for near a year. She was really apologetic and explained she clinic alone in this area and only works part time (15 hours pw). There are two clinics every week but as she said, it's not something that can be sorted by a 5 minute chat, she needs to spend quite a bit of time with people.

I was really shocked to be honest, it seems to be such a common problem and a really distressing one for the DC's, you would think there would be more help available.

Regarding pooing in a nappy....we only started potty training DD last week as she is terrified of the potty or toilet in general. She has been doing wees on the toilet brilliantly but still scared of sitting for a poo, so she's in pull ups. Unfortunately, this past week has been a really bad one for her so despite her doing really well she wouldn't sit on the toilet at all today as shes afraid of the poo coming out and is in a lot of pain.

The nurse did say that we should do exercises with her five times a day when she has runny poos and she can't hold them in....sit on the potty and push 4 times for 5 seconds each until she kind of accidentally goes and realises it doesn't hurt. Then a reward with stickers or a treat.

She also said to get a jar of cream...anything like Sudocream and decorate it with glitter etc. and tell her its special cream to stop the poos from hurting. Then put it on before we do the exercises with her and hopefully it will help her to relax. I thought these were good ideas but getting DD to sit on the potty again at the moment is going to be a battle.

However, the nurse assured us that normally, once the pain goes and the fear goes everything else will fall into place in it's own time. My DD has another year before she starts school so I'm not panicking yet. Her Pre-school know about her problems and are supportive and her little friend at Pre-school encourages her to sit on the toilet :)

I would recommend that you ask for a referral now and get the process started, they were definitely a lot more supportive than I expected.