Help please re Movicol

[sunflowervalley]

Hi,I posted a couple a weeks ago asking advice about movicol that my Ds who is 6 has been prescribed.

Am under pressure from the paed and my DS's clinical psychologist to adminster(sp) this and after a discussion it was suggested I was up front with DS and tell him it is to make his stomach feel better and not try to hide it as they said it would be decietful and they don't think you should lie to children.

Am now in the situation today where I talked with DS and told him it was to make him feel better and it was a magic potion .

He looked terrified and flatly refused saying he felt better and he was'nt going to drink it.
He then would'nt drink the drink I prepared for him and got his own plain bottled water from the fridge.

DH witnessed this and said he could see how upset he looked and he obviously got his own drink so he knew what was in it.

I should explain that DS has selective mutism and does not talk in school and he also has problems with toileting and a toilet phobia.
We are working on this with the pyschologist but any discussions about taking the movicol have been in front of my DS and my DH or myself and of course DS has heard this and is now worried.

We have a school meeting on thursday and the psychologist will be there and am feeling under pressure to have given DS the movicol before our meeting.
On my last telephone conversation with the psychologist he made out it was my anxiety about giving DS the movicol and I was playing around with his health.

My DH said it was too much pressure for DS and to leave it for now.

SM is an anxiety disorder and can be linked in some cases to toileting issues but it is getting the psychologist to understand this and by discussing this in front of him it is very dis stressing for DS.

Am now wondering whether I should have just added it to his drink wthout him knowing but that feels so wrong.

Am dreading facing this psychologist at the meeting now as he made me feel such a bad mother.

Anybody?

I thought this was going to be a straightforward thing I could help with when I clicked, as I've just started my DS (2.1) on Movicol. but it's a lot more complicated, isn't it?

First, I don't think you could have slipped hte movicol into a drink - I've tasted it (after DS refused the first lot) and it's yuck. So I think your DS would have noticed it. I hide it in (very strong) Ribena, but then my DS is very small.

You sound like there are some problems with your DS's psychologist? He shouldn't be making you feel like a bad mother - you sound like you are dealing with a lot.

I'm sorry I don't have any great advice here, just that (morals aside) I don't think hiding the Movicol is going to be an option, and BUMP for you.

What else have you tried other then the Movicol?

Thanks CaptainKarvol for your reply.

It has made difficult as DS has been present at the discussons on this as the psychologist thinks we should'nt hide anything.
As you say with DS being older it will be difficult to hide.

I feel like DS feels I am trying to trick him now.

DS cmae in the kitchen to get his drink he had poured earlier and before drinking it he looked over at the jug I had made the movicol in as if he was checking it was still all there.

He gets very worried about things and is an ultra sensitive little boy and hate to see him with that worried look on his face.

avenanap-we have'nt tries anything else,the movicol was suggested by the doctor as they think DS may have a blockage and that is why he goes in litle bits but often.

He does'nt seem to be in pain when he goes and I think the toileting phobia has something to do with it as well.

A fear of going to the toliet can cause this aswell. Ok.
What's his diet like?
how many times does he go to the loo?
is there any reason why he's frightened to let it out?
any abdominal pain?

avenanap-his diet is pretty good.
He eats lots of vegetables and will eat some fruits.
He loves pesto and pasta and most things really.
He usually has weetabix or rice krispies for breakfast and sandwiches,a cereal bar,apple and occasionally sea salt crisps.
He drinks lots of water and will eat crispbreads and cheese.
He does have cookies sometimes and penguin bars.

He does'nt use the toilet at all so is in nappies/pull ups if he will put them on.

But won't wear pull ups as he sees them to much like pants which he will try on but not keep on.
He has a statement at school so his 1:1 is there for him during the day and is gradually trying to help hm with his phobia.

He does'nt seem to be in any pain,he has'nt mentioned any .

Is his statement for his not being able to talk? Did you skip the potty when toliet training? What age did you toliet train?

How often does he go.

TBH when DD started movicol it had quite a dramatic affect (she pooed rather a lot and without warning initally). If your DS already had issues about toileting it may not be a very positive experience for him.

sunflowervalley - I'd post this in special needs to get more advice.

Sorry - my dd is young and don't really have advice re srategy of getting him to have it. Was just going to ask if you have the paediatric version cos its supposed to taste much better than the half strength one (they're the same in terms of medicine and the half one is loads cheaper so you may be fobbed off with that)

Hi,his statement is for his selective mutism but also for his anxiety issues around toileting.

He has always been the same with regards to tolieting and tried to potty train him when he was about 2 and a half but he would never sit on one.
So bought a special seat and stool for the toilet which he occasionally would sit on but would'nt do anything whilst on there.

He did have a poo in the shower when he was about 3 and he looked really worries about what it was.

I am concerned that putting him on movicol as you say cece as it may make his anxiety worse.
But am being told we should give him this and in no uncrtain terms am made to feel I am failing him if I don't.

ejb1976-was given the adult version and told he was to take it once a day.
I questioned this as it said for over age 12 only.

How do I link this to the special needs section please?

It sounds like a toliet phobia, he's afraid of letting it go. It can sometimes be the fear of flushing what he sees as part of his body down the loo. Movicol may make this worse as he'll be going to the loo more. The trick (I may be absolutly wrong here, please remember that) is to convince him that his poo and wee is just the food that nis body doesn't need any more so it's ok to let it go. Do you have some pictures of a tummy, intestines etc? He's old enough to understand and he won't be very happy if you mislead him or fob him off. Please remember I may be wrong, having never met him, and it may not be the right thing to do. I've seen a couple of children with this though.

avenanap-I think what you are saying is what I have thought all along.

Letting go of a part of his body,as he has always had issues with having his hair and nails cut.

He has a booklet on what happens to poo and we watch the "come outside "episode on poo as well

He will only look at the booklet with me and his little sister and his dad don't know about the booklet he does'nt want them to.

I know I can't mis lead him as he is very aware and would feel I am trying to trick him and don't want his trust in me to be ruined.

. Poor thing. He must see it as loosing a part of him. That's quite sad. Have you spoken to him about why we eat and what happens to the food?

The booklet we have is told in a child like way and makes a story out of it and he seems generally interested in it.

But wont talk to me about it if I ask him why he is worried and changes the subject.

Hmm. Would the school nurse do it? You can contact her through the school. It may help him for someone he doesn't know very well to have the talk to him. He's probably embarassed. He can't relate the book to him if you know what I mean.

def ask your gp to prescribe the paediatric version - much, much more palatable than the adult one

ds wouldn't touch it in water, but would take it in ribena

to clear ds' initial blockage we gave him masses of sachets (think it was about 8 per day) during Friday and Sat to avoid the potential for an explosive reaction at school

if he has a blockage, his colon will be really stretched, so he will no longer be getting the sensation of 'needing to go' so tbh it's probably gone way past any psychological cause

ds also poo'd accidentally in the bath a few times when he was 2 or 3 and was utterly horrified, and hated having hair and nails cut, however getting his constipation sorted was the making of him - he's changed dramatically and is now much less anxious - certainly I know how hideous and toxic I feel if I get a bit constipated - our kids are/were feeling like that all the time - the first few weeks of the treatment were tough and for a while it felt as if we were going backwards, but now I'm so glad we persevered

good luck

His 1:1 is talking to him about this and is encouraging him whilst at school to sit on the toilet and he sems to respond well to her.

He does'nt talk to her although when I go into school to do sliding in sessions with him and she is present he has talked a few times to me so she has heard his voice.
But the last couple of weeks he has regressed a bit and will only whisper to me whilst reading.

So it is difficult obviously for her to gage a verbal impression but she has said she sees the anxiety in his face and body language.

mimsum,I did raise the issue with the GP about the paedatric version buthe said he prescribed his one s is the ame dosage but only needed to be taken once a day.

To be honest I found the GP to be not very helpful at all.

Your suggestion of taking it fridays and saturdays sounds a good one as don't want hi to have exolosive reactions at school.

Did your DS just take 8 satchets a day on those 2 days then and not in the week?

We were advised he should take it everyday.

I know if I suggest this the psychologist and paed will say I am trying to avoid giving it to him and that won't be best pleased.

Feel I can't get it right whatever I do.

I am trying to get hold of the paed this morning to ask for further advice.

Don't know what to do for the best.

how's it going with your ds?

I'd stick to your guns about the paediatric version - the pharmacist once gave ds the adult version by mistake and he wouldn't touch it

to start off with we only treated ds at weekends - 3 in a row - and then we gave him a sachet every day plus a dose of laxiberol (laxative which makes the gut spasm to help tone up hte colon and move the poo along)

I must stress that this is long-term treatment - for us ds had been suffering from constipation for more than 2 years by the time he finally got seen by someone who actually knew what they were talking about - and it took at least 2 years to get him to his current stage where he's basically ok but doesn't take much to tip him over into constipation again

is there a paediatric continence clinic in your area? you might be best off seeing someone who deals with this kind of thing ALL the time, rather than psychologist who might not have as much experience with specific poo problems - the 'poo nurse' at our local hospital doubled up as my guardian angel and I will be forever grateful to her

Hi mimsum-I talked to the paed today and she said the doctor should have prescibed the paediatric version and to get it changed.
She suggested as we are having problems getting DS to drink it to talk to each day and just ask him to try a little bit at the time and just persist with it.

Will see what reaction I get from the pyschologist at the meeting on thursday.

Like you did with your son I am going to suggest we start off with weekends only and see how it goes.

We were seeing a poo lady from family services but she did'nt seem to understand DS's phobia at all.

My DD has had the movicol paediatric prescribed and I found apple juice worked well to disguise the taste of the medicine. she is only 2 tho, so doesn't realise that the medicine is in there. Just a thought. Good luck.

Thanks Jan,will keep percervering.