DS is bad this week :/ 4-5 changes of pants a day for the past few days. 2-3 rolls of toilet paper + wipes in 24 hours. Only 2 bath/showers thanks to the wipes, but they won't last long.
This has been ongoing for over 18 months now. I was naive & thought it was all getting better & stopped the meds.
So tell me, why movicol? Is there nothing else that works well enough that might be easier to take?
At the moment, because of the compaction (he's never been this bad), I'm trying to get 4-6 adult doses into him a day. But they didn't give us flavoured ones this time... Not nearly as easy. We did have a win with only 1 sachet & a glass of strong choc milk... But milk isn't really going to help the situation.
Is there anything else? Maybe in pill form? Is there a reason movicol in particular is used?
I had to keep him home from a boys day out at the burnouts today because of it & I'm really feeling the unfairness of it all. He's missing out on life. And I'm struggling to afford the toilet paper, wipes, and hot water to keep up.
We are going through this too, we used actilax for about 2 years, before that we used osmolax and tried swapping back as the actilax stopped working but it caused an allergic reaction. So now we are using movical, trying with a single dose. The pead wants a double dose but don't think it will work. We used a tablet, ducolax but only for 10 days aren't allowed to use it any longer not sure why as it made dd get up and go which is what we were aiming for. Apparently movical does the same when the dosage is right, actilax is a softener but we can manage it with diet. I understand what you mean about them missing out on life we have the same issues.
He's at the point that he can't feel he needs to go again. Regular toilet trips. We've been trying for about an hour between today.
Need to clear the blockage to shrink the bowel back so he has sensation again.
I'm taking dd1 to the gp on Wednesday to see what he suggests. 10 days would be enough if it clears most of it. We can continue one or 2 a day, but hard to do more with school.
We've been dealing with this for well over four years. Some things we have learnt;
- medication, we've been through a lot before finally being moved to osmolax which is similar to movicol and works the same way. Essentially these two draw water into the bowel, they don't cause a dependency and they don't make the bowel lazy. For this reason they can be used long term with little side effects, up to three years.
Although not ideal if you need to use fizzy drink to get the medication in or whatever the favourite drink is. Osmolax won't change the taste of the drink though will curdle cold milk.
- water is your friend, not enough water means that these medications do not work efficiently or effectively.
- this is a long term problem which requires a long term solution.
- routine, routine, routine. Especially where toilet refusal is involved. So sitting on the toilet after every meal ( the most likely time to need to go) sitting for a minimum of five minutes and rewarding just for sitting. Sensation can take months, even years to return if at all. My own child doesn't have normal sensation, we toilet each night before bed as part of the routine, this is just when he goes and how he determines his toileting for the day. He doesn't feel the need to go unless he is in severe pain, we go as a matter of course.
- severe back log, you may need to consider a suppository or enema to stimulate the bowel and clear the back log or if severe enough seek assistance from your hospital.
- position matters, we keep a stool by our toilet and it is used for the purpose of doing a poo. Feet are placed flat on it and the correct pooing position is then assumed. Google it. It helps. Don't fight the body work with it.
- Bristol stool chart, keep a chart in accordance with the Bristol scale, it will let you know what is happening and where you are at. It can be invaluable guide, record when he goes, how much difficulty and what scale it fell. This can also help you later if things continue to escalate and if you need to see a medical practitioner.
- weaning, if you think your ready to wean then you probably aren't. Wean too early and you can wind back at step one. No where. Weaning should be done gradually so that you can see if you are going backwards and you can go back a step. We've been trying to wean for years, we are getting close. You shouldn't wean until you have a pooing routine in place and follow it religiously with success. Another reason these medications are recommended for children being that they are easily manipulated and you can tell how you are going each step of the way. It can take years for sensation to return and for the bowel to shrink. Again this is not a short term problem, it will take time. One day we will get there until then I'm happy for him to be medicated if it means he has a normal life where our every moment doesn't involve pain and poo. We have our routine and unless you were to come to an appointment with us you wouldn't know he has had this issue for years.
- inguinal hernias, enough strain can cause this to form. Be alert not alarmed.
- doctors will only get you so far, gps are just that general practitioners. Our best ally has been our paediatrician, if you think it is not behavioural then ask to see a gut and bowel specialist, otherwise a behaviouralist specialising in constipation. We have gotten further with our pead than any doctor before her. Our gps actually prolonged our problem and made it so much worse than it needed to be. If you can also seek out a continence nurse they may be able to offer you more advice. I understand you will likely have to travel to a major city centre for these. They are worth it.
Thanks Abigail. I was hoping you'd see this. Even though I remember you warning me about 12 months ago :/
He is now under the care of a behavioural paed in Perth. I plan to ask her about video conferencing, so we can continue seeing her. I haven't met one this good ever. The one dd see's closer only really does check ups. I've explained anxieties etc to her & all she's done is recommend books.
DS is now seeing a clin psyc weekly for the same reasons. He is more severe than her, but I do think this paed is much more proactive.
I do believe it is mostly behavioural. He would avoid using the toilet at day care at 2.5 even for a wee. I don't think this is normal. It makes sense with all his mental issues though.
He isn't in pain... But now maybe it is time to see a specialist just in case. We did see a continence nurse, she explained a lot of this I didn't know before & gave us the chart, but we didn't hear back from her. And she's the only one remotely close (2 hours).
Now that I know the reasons for movicol I can at least explain it to my mother who is really good at making me feel like crap about it... It's disgusting, that's not normal, years? No that's ridiculous. Cheers ma.
*sigh* I'm going to put in for carers allowance. Try help with the costs of travel. 120 k round trip for psych weekly, 100 k round trip & over night for paed (iptas covers for $200). Then the toilet paper/hot water etc I can't afford.
I am way more onto it & understanding than I was last time. I know now I've really gotta do it right this time.
He was having the movicol with tea. Mum suggested cordial. I only ever allow water & milk. And have had to really watch the milk intake because that's all he was eating/drinking for a day or 2 last time.
He may not be drinking enough water. So I did think one big drink of cordial after school, just to get a decent amount of fluid into him might be ok. He does eat a lot of fruit, another thing I struggle to afford at the moment. Other than fruit, meat & bread though.. He's a really really difficult eater. I try to get whole meal over white for crumpets, wraps etc. they're easy. Bread is a bit of both, but mostly white. It's the only thing that's no good that I haven't cut from all their diets.
I'm not dealing well at the moment. Really struggling with the lack of support right now.
Careful you balance the water with the amount of fibre, to much fibre with too little water has the opposite effect to what you're aiming for.
We use juice for our osmolax, the dentist hates it, I don't care, it's the lesser of two evils at the moment. My motto is whatever works.
Four years on and I know who I can and can't talk to about these issues. Those who have seen him at his worst don't question it. And I have a couple of other friends who have kids with the same long term issues. You know where and how to find me if you need to chat.
Ds isnt a particularly anxious child but until recently would not toilet outside of home. It will get better but it takes time. Hang in there.
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