Countdown for Moviol disimpaction!!!

[fuzzalert]

Makes it sound like a date for a rocket launch!!

What it's really about; my nearly 8 year old son who has an overactive bladder has more recently experienced soiling accidents as well or just having the urgent need to go, poor thing!

His gastro doctor sent him straight round for an X-Ray and it appears the whole of his colon is chocca block full so he needs to be 'flushed out' with movicol

I have experience dealing with movicol when my daughter was constipated as a baby but never had to give such high does initially

I know this is what has been advised by the hospital to do and the movicol leaflet even gives recommended doses but even the GP says its a brutal quantity

He has to start on 4 sachets increasing by 2 more per day until he reaches 12 per day . So that's the first 5 days covered then move on to medium term of 2 sachets per day!

The gastro doc recommended my son take a week off school to do this but we've decided to wait until the Xmas holiday

I wondered if anyone else has had to put their child through the disimpaction process with movicol and if you have any tips/advice as I feel we've been given instructions on how much to give him but not what to expect! Will he have to be near a toilet for the first week, will there be leakage, should I put him in a pull-up?

Any words wisdom are gracefully received

Thanks

Amy

[Alibee75]

Good luck with that, sorry I can't offer any wisdom but poor you guys I hope it goes well

[Georgina1475]

The schedule is the same as my son went through recently. Hopefully it will take effect quickly. Make sure he keeps drinking as much as poss. Good luck

[fuzzalert in reply to Georgina1475]

Thanks for your messages!

Due to his urgent/frequent bladder he has to drink 1200mls/day anyway (as a way to increase his bladder strength) so drinking lots shouldn't be a problem!

Did you find your son having soiling accidents during that first week and is he on a low dose of sachets after he disimpaction?

Thanks

[Georgina1475 in reply to fuzzalert]

He soiled constantly day and night so it was exhausting for us both. Now he takes a maintainance dose of two sachets per day.

[ERIC-Charity Partner]

Hi Amy.

We have a blog that is exactly about disimpacting over the Christmas hols. The tips are based on other parents' comments left on our Facebook page - ericuk.wordpress.com/2015/1...

Good luck!

Rhia

[Georgina1475]

How are things going?

[fuzzalert]

Aren't children tough cookies?! Most adults wouldn't have coped with what some kids have to put up with!

He has done so well taking the movicol, especially as he already takes solifenacin (Vesicare) tablets for his urgent bladder

He started disimpaction Friday afternoon. No accidents up until this morning when he had to run to the toilet but didn't make it. He'll take 12 sachets today then i assume we move on to 2/day?!

We saw a urologist last week to focus his urgent/frequent need to urinate. He said he wants to get his bowel issues sorted first before further investigating the bladder as his soiling accidents have only been happening since April but bladder issues have existed officially for 3-4 years so it feels like we're one step forward and 10 steps back!

The urologist also suggested giving my son a suppository as they work differently to movicol. He's had one which had an instant affect but feeling cautious about giving anymore

Anyone else used suppositories for their child when going through disimpaction?

[Alibee75]

Children are amazing Amy! He sounds like he's been coping really well. How's this past week been?

Merry Christmas everybody

Ali

[Georgina1475]

The bum medicine as my son calls it worked really well as it has a quicker effect but he could not have it for more than a month so we went back to liquid to give the nerves the signals that they need but it was harder for him so we basically started back at the beginning with just movical and it has a much better effect for him. Our little people as so strong and cope much better than many adults would with the same situation it's all in a normal day to my son as he doesn't know anything different he's been like this since before he can remember. If he would feel the sensation of needing to poo them we wouldn't have so many soiling problems but his colon and bowls are so damaged from constant constipation that his nerves don't send signals.

Glad your son is doing well and keep in touch

[KCM23]

I'm interested to know how you managed to get Vesicare for your son ? My daughter has an overactive bladder and has been on ditropan for about 4 years. It doesn't seem to be helping anymore. Any tips gratefully received !

[fuzzalert]

Ditropan is oxybutynin isn't it? Originally my son saw the HealthyBladder Team which was run by the school nurses team who gave excellent advice; good drinking, double voiding, no dark drinks etc. He followed everything but made no difference as far as strengthening his bladder. He was referred to a general Paediatric consultant who put him on ditropan/oxybutynin. Within weeks of starting it his behaviour changed dramatically with erratic emotional Incredible Hulk outbursts. He stuck with it for a couple of months but his emotions were all over the place so I requested he try something new. He then went onto Tolterodine which made no change whatsoever and I'm sure you have to do the same, complete numerous bladder charts so you could see there's no change. His consultant has now let him try Vesicare which he's been taking for a year now. I can definitely see an improvement on volume outputs of the occasional 150/200mls still going 12 times/day is incredible compared to his usual 50mls 20 times/day so something is working except for the urgency, that is hard to believe unless you actually see it. The need to go comes from nowhere and cannot be stopped (poor thing!)

Present day, where he stands now, the urologist he saw before Christmas because I asked for a second opinion, just wanted to double his dose of vesicare. Personally I'd rather not do that as I feel if the 5mg dose isn't making that much difference I'm not keen just giving him more drugs! The consultant has recommended lets get his recent onset of constipation sorted first then reassess in couple months

He has also been referred to a child psychologist, I refuse to believe that his bladder issues were originally started from anxiety or behaviour but definitely believe his problems have made him anxious as his issues are all with getting changed at school but not being spotted doing it!!

Sorry I've waffled but it's a tough subject for all parents and kids going through this!

How old is your child? Have you requested an x-ray? Sometimes a blocked bowel/colon can push on the bladder causing it to become overactive

Also take photos of every urine chart your daughter does so you can refer back to them and write your Qs down when you go for your next appointment If the appointment is a long way off then email your medical contact and say that your daughter has been on ditropan for 4 years making none or little difference. Go armed with a urine chart as proof My sons original appointment at the hospital I was pointed in the direction of the ERIC website which has been useful. In the meantime has your daughter got a Wobl watch? Vibrates with reminders to go to the loo at school. Novelty wears off after a while but a great device for kids at school with these kind of issues

I would tell them you've been on ERIC and in touch with a parent with a child with similar issues and you want to try a new medication. They may start your daughter on Tolterodine

Good luck and let me know if I can help in any other way

Amy

[KCM23 in reply to fuzzalert]

Thank you for taking the time to reply. Yes Ditropan is Oxybutinin. She sees a paediatric urologist but we aren't due to see him till the summer. My daughter is 7 and hasn't ever got to grips with bladder control. We have a wink watch, which now her teacher is wearing as she had got a bit complacent with it and we suspect ignoring it sometimes. One of her problems is that she goes to the toilet but then as little as 5 minutes later is wet. It is getting us both down now.

She hasn't had an x-ray, but had an ultrasound a few years ago.

Perhaps I need to get her referred to a paediatrician to rule any other issues out.

It is such a relief to hear similar stories from other parents, sometimes I feel we are the only ones having these problems

[fuzzalert in reply to KCM23]

Sounds like our children are in similar situations.

Firstly, I assume you know about double voiding? My son used to pee 20mls then 60 seconds later do the same again, urgently! So the rule in our house is that he has to count 30-1 backwards before he gets off the loo. Most of the time a second lot comes out! Of course at school I imagine it's a different matter!

Speak to your daughters teacher or the T/A and ask if they can do a secret sign with their hands like a capital T for example as a signal for her to go to the loo!

My sons Yr2 teacher set up a chart that lived in his bag of spare clothes so that when he had an accident he took one of the Spider-Man stickers and gave it to her. She noted down when accidents were occurring so we could try to pick up any patterns of when it happens. Turns out mainly break time or after school clubs so you need to get lunchtime staff in on your daughters needs so she has free access to the toilet as and when she wants! I got the hospital to write a letter for the school and asked the head teacher to ensure all staff were aware of his situation, be discreet but supportive.

If I were you I'd get hold of your urologist secretary's details, ask for your email to be forwarded on to them saying ditropan not working over a long time attach copy of urine chart or at least quote one days worth of output volumes They may change prescription if they agree to change medication or may prefer to see her before doing that.

Also request an x ray because the CT scan will have been looking at bladder size and making sure kidney and tubes are ok/no blockages etc. An x eat would show any faecal blockage

The stage my son and I are now is the point of running out of options and dare I say hope but I have to keep reminding myself he used to do tiny wees and twice as much. I've been told it's a slow process but I understand when other parents say it tests their patience!! I'm at the stage this week where I've asked my son to make an effort getting changed and if possible just try to make it to the loo. I'm reverting back to a chart even though he's nearly 8! I'm going for..."if you get changed at school you get 5mins/day built up in credit of watching time on tv "

Hope that helps a bit and yes really comforting to hear others are going through this