Hi Gemma

I went to my doctor and asked for supositorys (nasty but effective) to use when he is in pain and we need to shift it, I also asked for movicol, it can take a while to figure out a suitable dose, and if you stop using it for a day or two you go back to square one, so it's better to reduce the dose instead of stopping it.

We used Lactulose for a while but all it did was soften the poo and not move it, and if the movicol does not work ask to try something else.

You could also do a stomach massage a couple of times a day, that is designed to help the poo move through the body.

Lie her on her back (after a bath would be good and/or before bed) rub up the right hand side of the stomach then across to the left (about an inch under the ribcage) then put your hand behind her left side (just above the kidneys) and pull your fingers/hand round to the front over the top of her hip and follow the line of the pelvis down into her groin, 5 mins of this a couple of times a day should help and certainly wont do her any harm.

I only pop in here now and again but you can find me under the same name at specialkidsintheuk.org.

Good kuck & hope you find a solution.

Raine x

My 4 year old daughter has always suffered with constipation. We have had many trials with movicol doses but got it right eventually -2 a day. But more importantly we make sure she has lentils everyday without fail! She has upto 7 different types of veg a day mixed lentils daily pureed. We also find that fish especially cod really helps though makes her poo stink!!! Avoid potato and other 'water retaining' veg- courgettes, pumpkins are good.

Hi Gemma
I noticed you live in the Newcastle area. Have you heard of the Percy Headly School? It is an extremely good special needs school. I would think they have some sort of early years intervention programme. It would be worth contacting them.
Rosie1

Hi everyone :)

Raihmah - that sounds like excellent advice. Chloe is very fussy with her diet which does make things more difficult so I shall try that.

Rosie, I hadnt heard about the foundation so thanks so much for bringing that to my attention! I have checked out the website and will certainly be contacting them

hope everyone is well :)
x

Hi all,

My three year old daughter has moderate spastic diplegia with no learning difficulties. She has suffered from constipation since being a baby and has had a stretch operation about a year ago. She is on lactulose at the moment and when i have asked my gp they just reccomend increasing the dosage but even then it is a bit hit and miss as to whether it actually helps. She is not toilet trained.

Im finding it increasingly hard to deal with the times when she is constipated, emotionally it is killing me to see her in so much pain on a regular basis. On average every 3-4 days we will have the drama of her having to use her nappy. It is painful enough that it wakes her from sleep and the more pain it causes her the more she tries to prevent it from coming out. Also due to her cp her limbs will basically freeze and her legs go rigid which results in my having to forcefully manipulate them and effectivley forcing it to come out. As you can imagine this is extremley distressing for myself and Chloe. I also find it so hard that I often get frustrated with Chloe and will tell her to bend her legs, getting myself quite stressed out which Im sure doesnt make her feel anymore comfortable! This is, of course, just down to the fact that I am getting so upset to see her in pain and just want her to do it! Chloe is only recently diagnosed and I still find I am having to remind myself she can't control her muscle spasms which makes me feel INCREDIBLY guilty.

These times are so upsetting for us both and I am aware that in children with cp constipation is common. Just wondered if anybody has this problem and how they deal with it, both practically and emotionally.

Thanks so much for taking the time to read this, any advice would be very comforting :)

Thanks so much for your advice :)

I have been offered movicol in the past, however found it very hard to get Chloe to drink it as she doesnt like juice etc but I think Im going to have to try again. She has been given senna to add to the lactulose but still doesnt help.

But it makes such a difference to interact with other parents who understand how upsetting and distressing this is - i feel like I have been left to fend for myself since Chloe's diagnosis. After the initial visits from health visitors, social workers, O.T. etc I feel like I dont know where to go from here so this forum is a big comfort at times :)

Hi - my son (3 in October) also suffers from constipation - we have found the most effective treatment is movicol - we went to the constipation clinic at the hospital who put him on a very large dose to start with (about 6 sachets a day) which we then reduced as things started to shift. I now give him 1.5 sachets every morning in his drink. He still has pain before hand but things are so much better than they were. We did try Lactulose but some people believe this can be counterproductive as it can make you gassy. Good luck and best wishes to you both, Ben

hi, we were using suppositories or the microlax enemas but my son wasnt keen on them so we now use 2.5mls a day of sodium picosulfate which is the ingredient in dulcolax and it works a treat although they are a bit mushy tbh!

We have found a teaspoon of split golden linseed mixed in with breakfast cereal in the morning and another one mixed with yogurt at tea very effective. Encouraging extra drinks as well has helped alot.
Louise

Hi

I agree with Raine - our son used to take lactulose but it wasn't working and is really sticky and sugary too. He is now on movicol and like Raine says, it's a bit temperamental and it takes a bit of trial and error to get the dosage right but our son doesn't get half as much pain now he is on this. We probably use one sachet over about 4 days and he drinks it in his juice over the course of the day so he doesn't realise he is taking any medicine either which is a bonus!

Hope this helps

Diane

Hi, just a quick one. We could never get a huge drink down Heather so with her movicol we mix the sachet with a little bit of juice or some ribena (I know it's bad but desperate times!) - we then let her use a medicine syringe to squirt it in her mouth. I know the packet says to mix it with a large quantity of water but we have found that this method is still effective. The other thing that is a bit different is Bowen technique - it's an alternative therapy that has been really helpful for Heather generally but also sorted her constipation. You would need someone who had done the Master's classes and would know the 'Constipation Move'. You could contact the Bowen association (www.bowtech.com) for more info. The first Bowen session Heather had not been for over 10 days and within hours of her session it was all moving!! Good luck and I hope things get easier, I know how distressing it is.

Hi, sorry to hear about Chloe's distress at having to go to the loo. I am now approaching 47 and have suffered this most of my life, never reallising until reading this forum that it could be my cp causing the problem! Obviously when I was born there was very little help and advice for my parents, other than that they should leave me at the hospital, i'm glad they didnt.

I dont know if this will help you, but I have discovered - through my own experience, that a little vasaline helps the poo to slide out! I have learnt that because of the pain I would put off having to go, but that just makes things worse, I am old enough to know that, Chloe and other little ones I have read about wont understand that, but a little vasaline, might just help her. I have never tried surpositries, dont think I would be able to manage to relax enough to get them in. This is the problem with CP, your muscles wont allow things that your body dont like, no matter how hard you try to relax.

Good luck and love to little Chloe.

Karen

hi just echoing what the previous reply said, movicol is the usual thing to try with this after lactolose, it comes in sachets and mixed with water, starts off with a small dose and then if that doesnt sort things out the dose normally gets increased, some children dont always get on with movicol, (my daughter didnt), senna is tried also sometimes, my daughter has ducolax suppositories which was prescribed by her neuroligist, after trying all the others, some doctors dont like it but its what suits my daughter best. Go back to you gp and tell them you are not happy with the lactolose and you want to try something else, if he dont agree, say im not prepared for my child to keep constantly be in pain with this, good luck! love Debbiex

Sorry, I just read Wenders post ..... I put Movicol in Josh's morning milk too, I try to give him some water about 30 mins later.

And as Karen said it really does help to talk to other mums which is why I go on special Kids as well ... I will try the vaseline too.

Raine x

Hi everyone and once again, thank you for all of your helpful advice :)

Jenkey - I will check out that website. I tried getting some movicol into chloe with a syringe, i probably didnt get the full amount into her but it did get things moving so thanks for that :)

Karen - nice to hear from you again, hope you are well :) Thanks again for your advice, i have found that the vaseline was quite helpful to Chloe so thats great.

Just wondered if you wouldnt mind me asking - what does cp feel like? I hope im not being rude or nosy asking you this (i know its sort of off topic) but chloe is quite recently diagnosed and as a parent im still finding my way around all the information regarding cp, its so interesting to discuss it with someone from the other side of things. Chloe is due to start sessions of botox soon and the doctors have told me although Chloe won't really be aware of the feeling in her muscles as she doesnt know anything else it will start to become more apparent to her after she begins her botox sessions - i cant really get my head around how it must be, what the sensations are like etc and I really want to be able to better understand from her point of view. She is also extremley high on her toes and although she doesnt seem bothered by it, to me it looks so painful!

Gemma
x

Hi again Gemma,

I am glad the vasaline helped - please dont ever be afraid to ask me anything, and i mean ANYTHING. If I can help you I will be only to happy to. It must be very difficult for you as a parent, and you are probably feeling so helpless but there are lots of other parents on here in the 'same boat' as it were.

I am now in my mid 40's so any treatment that is available now is completely different to what was on offer when i was a child. All I can tell you is that I also walked on my toes, and at 3yrs old they set my feet and up to my knees in plaster for 6 weeks to try to stretch my achillies tendon. That didnt work, so they gave me splints. At 6 they opperated on my left tendon, and at 8yrs on my right. This made me walk flat on my feet, and although that was the desired result, it put my balance out and I was no longer able to walk confidently because they had upset what was a 'natural' walking position to me. I attended a special school where physio was a daily routine, and this helped a great deal.

What I will say to you, is that my CP has never caused me any pain, my legs and hands are stiff and I get tired and cant walk very far but with no actual pain. That is until the last two or three years, but that is probably partly due to my age, and weight!

I suppose the best advice, in this respect that I can offer, is that you speak to and meet as many other mums and young CP sufferers as possible.

What part of the country do you live? The reason I am asking this is that there is a centre for Conductive Education in Hereford, there treatment is FREE. If you are interested in this have a look at their web site http://www.meganbakerhouse.org.uk. Appart from the treatment they offer to help with mobility and everyday living, you would meet other kids and parents there. I went for an assesment there in July and its a lovely happy place and the staff are so welcoming. If its not too far to travel, its definately worth a visit, even if you decide not to go ahead with treatment.

Well, I must stop rabbiting!

Love

Karen

[quote name='gemmaerrington' date='Sep 2 2008, 09:39 PM' post='24842']
Thanks everybody for your response and kind wishes :)

Karen - thank you so much for your honest reply - its nice and somewhat rare that I get a response from the perspective of someone with cp. And you are totally right, the nature of the muscle spasms that Chloe suffers from make constipation a much bigger problem than it would be for other children because suppositories are not even something I would want to try, it would be impossible. And in turn when Chloe is trying to go her whole body stiffens - its as if her brain is telling her to push but her whole body responds rather than just the necessary areas! She does also get into a viscous cycle of being so afraid of the pain that she will prevent herself from going, which only serves to make the end result worse. Obviously this is very hard to explain to a three year old!

I have tried to sneak Movicol into her water but it didnt go down too well, mind you I dont think I would want to drink it! Chloe contracted NEC at 10 days old when she was in the special care unit so she does have other factors affecting her bowel other than the cp, I think its just something we are going to have to learn to manage and make as comfortable as possible for her. So I will try the vaseline and let you know how it goes :)

Has anyone ever tried toilet training a child with this problem. We arent really near training yet (Chloe couldn't physically get herself onto a potty at the moment anyway) but obviously the day will come eventually and I am very apprehensive about it.

Thanks
Gemma
x
[/quote]

Hi again Gemma

I hope my comments have helped and if there is anything else - as an adult with CP, I can help you with please dont be afraid to ask. Even as an adult, who should know better, I go around the pain/constipation circle putting off the inevitable so you are quite right, you cannot expect a 3yr old to understand. I also understand what you mean about her brain telling her to push and her whole body responding. When I am in pain all my muscles, especially my legs go stiff, even to the extent that I have ripped the bathroom carpet from its fixings before today!! Its totally beyond my control.

As for the potty training, I asked my (now 70yr old) mum how she went on and she said that although it was very difficult for me to actually 'sit' on a potty, apparently they had to sit behind me to hold me up, the actual toilet training side of things was not a problem as I couldnt stand to be wet so I quickly picked it up!

Keep me informed

Just another thought, before I leave you - I have recently discovered that if I have breakfast cereal EVRY DAY that keeps me regular. Once in a routine it all gets easier. If I have toast etc I get consipation, which then escalates. I have tried high fibre diet and drinks etc but nothing helped.

Karen X

Hi Gemma

You could also register with specialkidsintheuk, their forum under the general section is worth a look.

Hope you get the constipation sorted.

Best wishes

Raine & Josh

Your question has generated some interesting responses and it's great that people are sharing their hints and tips and thought I'd add some info too:

Ok, the first question you should ask is "can she not go because of the physical movement of bowel?" or is it just difficult and painful to pass (normally hard, like rabbit poo)

One of the main function of the large bowel (before you get to the rectum) is to reabsorb water from the stool. If you give lactulose or movicol (osmotic laxatives) it keeps/put in some of the water in the stool and makes it easier to pass.
Sometimes you need to add a stimulant to increase peristalsis (movement of the bowel). Fibre is a natural stimulant that increases bowel movement-NOTE:**stimulant laxatives in children is usually discouraged-seek medical advice always**!!

I wouldn't try enemas or suppositorries until all avenues have been explored-as risk of damaging the rectal wall and increase the risk of infections when inserting things. NEVER TRY TO MANUALLY EVACUATE THE BOWEL!!

BE AWARE of "overflow"...when people get constipated, sometimes liquid can move around the blockage and exit the bowel. some people mistake this for diarrhoea and stop taking laxatives (when they are still constipated)

MOST IMPORTANTLY: Always seek medical/professional help-what works for some, doesn't for others

Ensure a good fluid intake (try introducing small amounts of apple juice)
Ensure a good fibre intake (fruit and veg)
Encourage exercise (where possible)

Good luck

Off the subject: you asked an "excellent" question in a reply to someone in the forum "what does CP feel like"

If you don't mind, I'd like to have a stab at answering that. All CP is different, depending on severity and limbs affected. I have CP hemiplegia (affects the left side of my body-with a completely normal right side)

The only way I could explain it- have you ever layed on your arm and woke up and couldn't move it? (forget about the numbness and sensation)-just think of the feeling of trying to move a limb that you can't-

I can't move any of my toes on my left foot for example. I've tried, it like communication between brain and muscle isn't there or gets lost (that's CP for me)

Cheers
DC

Thanks everybody for your response and kind wishes :)

Karen - thank you so much for your honest reply - its nice and somewhat rare that I get a response from the perspective of someone with cp. And you are totally right, the nature of the muscle spasms that Chloe suffers from make constipation a much bigger problem than it would be for other children because suppositories are not even something I would want to try, it would be impossible. And in turn when Chloe is trying to go her whole body stiffens - its as if her brain is telling her to push but her whole body responds rather than just the necessary areas! She does also get into a viscous cycle of being so afraid of the pain that she will prevent herself from going, which only serves to make the end result worse. Obviously this is very hard to explain to a three year old!

I have tried to sneak Movicol into her water but it didnt go down too well, mind you I dont think I would want to drink it! Chloe contracted NEC at 10 days old when she was in the special care unit so she does have other factors affecting her bowel other than the cp, I think its just something we are going to have to learn to manage and make as comfortable as possible for her. So I will try the vaseline and let you know how it goes :)

Has anyone ever tried toilet training a child with this problem. We arent really near training yet (Chloe couldn't physically get herself onto a potty at the moment anyway) but obviously the day will come eventually and I am very apprehensive about it.

Thanks
Gemma
x

Hi all

Sorry I haven't replied for a while - I always like to take the time to respond to people who have been good enough to leave me much valued advice :)

DC - I often wonder with Chloe what the issue is with her toileting. The stool is usual very hard and obviously painful to pass but because Chloe not only has cp but has a history of bowel problems having contracted NEC at 10 days old so there are a lot of contributing factors making it difficult to pinpoint one cause. I tend to just stick with the lactulose at the moment and I have thought that she had diarrhoea only to find she still passes a horrible hard stool that she struggles with afterwards but I have grown wise to that! I would be too scared to manually evacuate or even attempt to help the stool move - I get extremely upset when Chloe has these problems because I feel so helpless but feel there's nothing I can do to intervene other than hold her hand and tell her she's a brave girl. However I have recently found out that if I support Chloe into a standing position she finds it much easier and the stool passes much quicker.

Thanks for such a excellent and easy to relate to description of cp! Since Chloe's diagnosis I have become so intrigued by what affect it must have on the body - I would love to be able to understand how it feels for her. It's so strange to think that for her it's totally normal and at the moment she doesn't actually realise that not everybody feels that way. Im quite a deep thinker and go over and over things so as you can imagine Chloe's diagnosis has left me reeling and very thoughtful. It does sound quite uncomfortable - is it a constant feeling or just now and again? It must be very tiring at times.

Alison - thanks for the advice. Chloe used to be the same, she could go for ages without passing anything. I think this was as much to do with fear as not being able to. But I will bear that in mind. I tend to find going directly to paediatrics is easier these days - GP tends to just refer me on when they realise Chloe's condition!

Thanks everybody for your time, look forwarding to hearing from you soon :)
Gemma
x

Hi, tyla is 2 and has had terrible constipation sice she was a baby and can totally sympathise and relate with your distress, if its anything like my daughters the stools get too hard and too big causing her to bleed. We have tried lactulose, docusol and movicol and they all worked but gradually stopped working. The doc said we had tried everything we could and said we should try mixing the medicines together. We currently give her 1 dose of lactulose and movicol (5ml and half a sachet) mixed in the morning and it works a treat. Maybe its worth seeing your gp or pharmacist to see if you could try it too??
We also found sugar free lolly pops from holland and barrett worked really well for sometime aswell, - a fun yummy way for them to get relief..and theyre sugar free!

Hope this helps

Hi all

Just returned from a week at Butlins with Chloe which she thoroughly enjoyed (Bob the Builder is now the love of her life!!!)

The Movicol seems to be making a big difference now that we are getting the hang of it - Wenders, I know what you mean about having to give yourself a kick up the bum! I think I am more worried about potty training than Chloe, I sometimes have to stop myself from unintentionally holding her back. Its just that I don't want to put her purposefully into a situation I think she will find difficult, what parent would, but I guess I have to take a step back.

Karen - thanks again for the reply. I am in Newcastle Upon Tyne so Im quite far away. There isn't much in my area with regards to cp either so i am feeling very lost. I have joined Contact A Family so hopefully will get some response. But it is always a pleasure to talk to everyone on here :)

Hi gemma

I have always and still put daniel's movicol into his milk first thing in a morning. they dont 'recommend' it as you need water or juice to make the movicol effective, so I give him a smaller bottle (but now beaker with straw) or milk enough for it not to taste but not too much that he'd leave a bit, about 6/7 oz of milk. then we'd give him his favorite juice straight after which he'd sip at most of the morning as he's not a big drinker on a good day! so in a way he's getting the same stuff in his belly just in a different order.

we've never had a problem and the movicol gave us a different child within 36 hours of daniel taking it! it definitely worked for him and us this way... something for you to try anyway! :0)

As for the potty training well we've just potty trained daniel a couple of months back. All I can say is we'd got him off all meds, we'd been playing with the potty with daniel's teddy for a while, we kept getting him to sit on it, we talked about it everyday. then he would of it on his own etc. also daniel doens't haev much speech so we'd sign nappy everytime we changed his nappy and kept saying nooooo we don't weeewee in nappy we weewee in the potty then we'd take the nappy over to the potty to show him. we'd got the potty chair from Social services.

then I realised i was putting it off going for it as I 100% didn't think he'd get it, so after kicking myself up the bum and went for it and stopped the nappies. we spent the 1st 4 days in the house with him peeing everywhere!! everytime he started weeing i'd fly him over to the potty and catch the last few bits of wee in the bowl. :D then on the 4th day, i was ready for giving up no signs he was 'getting it' but in the afternoon he started weeing while on the sofa. but this time he pointed to the potty, the rest as they say is history... he got better and better every day and by 2 weeks later he was dry day and night with no accidents! i couldn't believe it at all!! :blink: :blink: :blink:

the pooing did take longer though.. we ended up back on full dosage of meds, movicol and docusol. he stopped pooing and wouldn't do it at all, he went 6 days without then eventually 'went' in a nappy. we did the same again and sat him on the potty and wipped the nappy off when he knew he'd gone past the point of no return... :unsure: :unsure: then the we;d go mental cheering and doing a poo poo dance. :D :P :D

we kept doing this until one day i was sat with him on my knee whilst i was rubbing his back, i had a nappy between his legs but just as he felt the poo coming he pointed at the potty so i flew him over to the potty and he did it for the first time with him wanting too!!! :D again it's just got better and better. we're still on the movicol everyday but i'm fine with that for now.

he still holds every now and then but because he hates taking the docusol by the syringe and say to him if he doens't poo he'll have to have the medicence, now he'll jump straight back on the potty and poo right away!!! lol :rolleyes: :rolleyes: :D

it's still a bit of an issue as he now says weewee in the last couple of week, but for him wee and poo mean the same so we're trying to explain the difference when he does them. he can still have his bad days but generally he can do it. he still ned help getting his pants down and wiping his bum etc. but he's now even sussed to push his willy down to stop him weeing out of the bowl! :lol: :lol:

sorry it's ended up a long one!! lol :D hope it's been some use!

Wendy xx
ps. daniel is 35 months old now and we started 2 1/2 months ago.

[quote name='gemmaerrington' date='Aug 27 2008, 08:44 PM' post='24698']
Hi all, My three year old daughter ...[/quote]

Hello, my son has suffered for years and I've tried Lactulose, Movicol, the only medication that works is the same as another reader, 2.5ml picosuplate. I've been able to get a routine going with this and can get him going on an evening 3 times a week. He used to go once every 10 days on average. You might struggle to get it from the GP I had to get it prescribed from my Paediatrician.

Hope this helps

Alison

through my own experience, that a little vasaline helps the poo to slide out! I have learnt that because of the pain I would put off having to go, but that just makes things worse, I am old enough to know that, Chloe and other little ones I have read about wont understand that, but a little vasaline, might just help her. I have never tried surpositries, dont think I would be able to manage to relax enough to get them in. This is the problem with CP, your muscles wont allow things that your body dont like, no matter how hard you try to relax.
Good Luck!!!