Hi! Looking for support and opinions on 7yr old on movicol!

[Leja]

Hi there!

I hope I’m posting in the right group! I’m new to this 😬

So.. I have a 7 year old little girl who has been on movicol for coming up to 4 years!

I was just wondering what people’s opinions were on long term use of this medication?

Basically she suffered with constipation but no one really helped, one week we ended up at emergency drs due to her being impacted, it was then they decided to refer her to a constipation nurse!

The nurse basically gave us some charts, and told her to drink a lot of water and take movicol twice a day- and basically she could stay on it forever.

This worked fine, but 2 years later I decided I wanted more answers, why does she have this constipation? Surely there could be something wrong and long term medication isn’t just the answer, so i decided to go back, she just gave me more charts, and told her to take sena along with the movicol this time... no answers just that “it happens and she’s fine on these medicines long term”

This condition can ruin our life at times! If my daughter misses ONE day of medication she is now constipated for up to 10 days... that’s missing just one dose!

We recently went to Florida, she missed a couple of days worth and it interrupted a weeks worth of the holiday.

She has the urge to go, she will sit on the toilet for up to 45 mins trying to squeeze it out but it just doesn’t come (which is where the interrupting life comes into it)

We have been through it this week, she is. Ow up every hour with the urge to go, but she literally can’t get it out!

When is enough enough? Her little face is awful, and I feel so hopeless!

I’m i talks with a private hospital, hopefully to get a second opinion, or at least some tests to see if there is anything medically wrong?

What’s people’s thoughts, is this normal? Am I being a paranoid Mum who needs to face the fact she just needs meds’ to help her go?

Sorry for the long message!

[Charlie5angel]

Hi Hun, I really feel that you should definately get some more answers, it's sounds as though this is the easy way out for the them to just keep offering movicol and sena, just think as a mother of three, I would want more investigation into it as there could be something they haven't picked up, a simple scan, blood test, etc.

We have the other problem with urine, my girl has a catheter fitted, I wasn't happy with the way things were, I had to keep pushing but we were incredibly lucky to have a great consultant who has undergone several investigations to get to the bottom of it. But it took a long time to get to that point after several doctors appointments, hospital visits. I feel your pain xx.

My daughter also suffered from severe constipation as a toddler but then it went the other way and she was then diagnosed with toddler diarrhoea but as the years have passed it turns out she had Coeliac disease which one of the symptoms believe it or not can be constipation, just saying I think maybe they should be doing more to find out why your little girl is this way as its not normal, not saying it is Coeliac disease but I bet you probably feel a bit fobbed off each time, bless your heart, I really hope you get some answers and that maybe you can get to the bottom of it.

We as mums really have to fight for our kids, I was fobbed off so many times and felt totally helpless especially when nobody seemed to listen but it sounds like you need a really good doctor who needs to just listen to you and maybe investigate further, I wish you the best of luck and keep fighting as we are their voices xxxx

[Heavenbound in reply to Charlie5angel]

See my comments. I'm on this site as Heaven bound. I've a photo of back of my son with red body warmer and looking onto a field. I hope my comment on that just posted helps. It's 29th October 20:40

[CN4321]

Hi,

I've only just joined this group, but was just wondering where you got to with this? Did you go private and did it help?

My son's situation is slightly different, but I also feel frustrated that he is always just given movicol and senna and no-one ever tries to find out what is causing this. They just fix the symptoms not the problem itself. Will this just carry on forever.

Reading some threads I see a few people talking about coeliac and dairy intolerance - how do you find out if your child has this?

Thanks,

Claire

[Hidden in reply to CN4321]

We got blood tests and poo sample done

[CN4321 in reply to Hidden]

Did they come up with any answers?

[Hidden in reply to CN4321]

Sorry i should have said that .... all clear 😭😭

[CN4321 in reply to Hidden]

When I ask if it will ever change my doctor said he might grow out of it when he's a teenager and likes spicy food!!!???

[Hidden]

I wouldnt listen to that !! It took us going to a paediatric appt and saying we werent leaving until they tested him. Thats after it going on for 2 years and 9 months !!