Feeling lost: Don't know what else to do.. My 5 year... - ERIC

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Feeling lost

naknik14 profile image
10 Replies

Don't know what else to do..

My 5 year olds teacher spoke to me after school again today. They are concerned that things arnt getting any better they have had to change him (He in pull ups) 4 times this morning. He has had a disempaction, on movical 1 a day. Don't know what road to go down next. I am thinking about asking his peadritricion if he can have a scan. (He also has pica chews toilet roll and towel). Feels like doctors and peadritricion say it's his diet. I came home crying as don't know what to do. Feel like a bad parent.

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naknik14 profile image
naknik14
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10 Replies
Alicass profile image
Alicass

Hi naknik14

I feel your pain and frustration. It took us 3.5 years to sort my son out. Had a Pediatrician appointment today and he's still poo free but after our 4 year journey we're now having to do pelvic floor exercises and use a potty watch as he still wets.

It sounds to me as if your son is still constipated. Perhaps 1 sachet a day isn't enough to unblock him. My son has been on Senokot for 2.5 years now and is still on 8ml per night. We've also been sitting him on the toilet twice a day blowing balloons with his feet up on a foot stool. This has really helped and we've been doing this for 18 months. We've been told to continue this even though he's poo free.

It's very frustrating to go through this. Is your son drinking enough? What do his poos look like? Ask a GP to feel his tummy to see if he's still blocked. Have you looked at the ERIC website they have a helpline too? I don't think people understand constipation as it isn't always about diet. There were many people who judged us for a long time but my son eats very healthy.

I can empathise with you whole heartedly and I find this forum very helpful as I don't feel alone anymore. On a positive note when I look back a year ago we're definitely in a better position now although not there yet so it's been worth all the work and effort.

Take care. Everybody in this forum will share your frustration and emotions. Good luck and remember you're not alone in this very stressful journey.

Xxx

naknik14 profile image
naknik14 in reply to Alicass

Thank you. One of my son's problems is he won't even sit on the toilet he cries and screams as soon as we mention it most of the time, but he sits down to wee and he has done a few on the toilet. Most of the time his poos are massive and they block the toilet. I have got a stool for him to put his feet on. He is under the ASD aswell as we believe he may be on the autistic spectrum.

Francesca17x profile image
Francesca17x

I really feel for you and I know how hard your situation is. You are definently not a bad parent. It’s so hard to know how to handle the situation, if doctors don’t have all the answers how can we ?

A scan would be helpful to show how bad things are and also how much the bowel has stretched. It takes a long time for it to shrink down again.

Have you tried eliminating foods? I took my daughter off gluten and all fast foods. It did help not entirely but I definently noticed a difference.

Tags hard if you can’t get your son to sit on the toilet. What about enemas ? Harsh but maybe the only way if he won’t sit on the toliet.

I hope the school are being sympathetic. I found taking in documentation explaining encopresis helped as I don’t think people really understand what is going on. I’ve cried so many times leaving school as well, it’s just awful x I think you only really understand when you are a parent dealing with this issue.

Try to stay calm and focus on the little things as I believe that going back to basics is the best way. I took my daughter off all medication. Got her to drink more and feed her lots of pears. We aren’t free of this yet and she too has a terrible fear of the toliet which she doesn’t even understand why.

I hope you get to relax and enjoy the weekend x

naknik14 profile image
naknik14 in reply to Francesca17x

Thank you that was really nice to read. School are really helpful and do everything discreetly. Don t really understand why he won't sit on toilet as he does to wee with o problem at all.

SallyandPaul profile image
SallyandPaul in reply to naknik14

Morning,probably the reason he doesn't like sitting on the toilet is because those massive poos hurt!! It takes months and years for them to recover from that. After a disimpaction give enough movicol and senokot for them to be passed easily. Also his bowel will be stretched which means a loss of sensation so he won't feel like going and therefore won't want to waste his time. I know that it's such an unfortunate and frustrating position to be in, I hate it, we've been going for over five years now!! Good luck xx

Francesca17x profile image
Francesca17x in reply to naknik14

For some reason children find pooing in the toliet really scary. Maybe a psychologist could help. My daughters fear came from urine infections at the age of two, because it was painful she stopped going and starting holding everything in which resulted in chronic urine infections, encopresis , stretched bowel and disfunctional muscles 😫😫😫 i have been dealing with this for six years now and I’m so sorry I can’t offer any miracle advice...just support x we have seen encopresis specialists, nephrologists, urologists, gastrologists, physiotherapists, homeopaths, endocrinologists and I’m still no further forward.

She now does bio feedback sessions to strengthen her damaged muscles ... maybe your son could benefit from that too. My daughter has also developed irritable bowel syndrome from the stress of it all ... it’s devastating .

I’m glad the school are on board, makes all the difference. Xxx

SallyandPaul profile image
SallyandPaul in reply to Francesca17x

Our daughter sounds almost identical to yours. She too has been suffering encopresis since three, she is now nine. Over the last year had lots of UTIs which antibiotics didn't help. We are aiming to go back to consultant after scans. Things have been a lot better with the UTIS though. Not entirely sure why but the GP prescribed antiseptic oilatum for the bath, no soap bath bombs etc. I also give her a vitamin called proven everyday which also contains acidophilus and bifidus. I don't know if this is just coincidence or what but things have been so much better. He said that they might inject Botox into the bowel to tighten it. She also wears a sanitary pad to catch the worst of the soiling and better manages herself. Good luck

Louloubelle23 profile image
Louloubelle23

Hi, so sorry to hear you and your son are going through this. You are definitely not alone and you are not a bad parent.

We have been living with this since my daughter came out of nappies and she’s 10 now. But it sounds like you are dealing with it at a much younger age than we did and that’s definitely a bonus for you. The longer it goes on the longer it takes for the stretched bowel to go back to normal.

It sounds like your son is withholding and that makes poo back up in the system and get dried up and stuck. Runny poo then leaks out round the hard poo, and because his bowel is stretched he can’t feel it. You might need more than one sachet of movicol plus a stimulant like Senna. If you’re not seeing a Paediatrician then see if you can get referred as they are experts in this sort of thing. They might also be able to refer him to a psychologist to deal with the withholding.

Going by my experience, my only caution with the laxatives is not to give so much that the poo’s are so runny they can’t control it. When my daughters accidents got more frequent and bigger the paediatrician’s answer was always to increase the laxatives... but I found it just made the poo’s like diarrhoea and she didn’t stand a chance of making it to the toilet in time. We’ve now slowly reduced them and got to a stage where the poo’s are still nice and soft but not runny. It seems to be working as she’s gone from 2-3 accidents a day to only having 4 in the last 6 weeks. I also think taking the same dose everyday doesn’t make sense as poo can vary day to day depending on what’s been eaten. So for example if my daughters not had a poo one day I just give her an extra 5ml of Senna just that night then go back to the normal dose the next day.

We also do a sitting routine - 10 minutes 3 times a day after meals.

It’s really not an easy problem to fix unfortunately and there’s a lot of guess work and trial and error. It might be worth making the school aware that it might take a while as I’m sure you don’t need them putting the pressure on you. They just need to know that you are seeing the right professionals and doing what you can. They just need to support that.

Good luck with it. Hopefully as you’re dealing with it early on it won’t take as long to sort.

All the best 🤞

Frustratedmum1 profile image
Frustratedmum1

Hi ya. Hope this is helpful, perhaps you would need to up the movicol. When I started on this journey my son used to do poos and you couldn't believe where it all came from. At this point of time he was on 1 movicol and I wish now I had put him on more as he was very blocked. We had to reward our son for sitting on the toilet because that was a daily battle not perhaps for going.

I would get a referral to a paeditritian as I have not found the GPS very helpful. I would also ask if they can do blood tests. They check for thyroid, chrones etc. Also ask if they can scan or x-ray your child. They are not keen initially to x-ray children so you may have to push for this a bit.

Hope this helps.

Poppymum profile image
Poppymum

I know the feeling of dreading the school pick up! I hate it as I hate it when the teaching assistant makes eye contact then beckons me over to say how the accidents have been that day. With my daughter it has been mainly wet accidents due to bladder spasms but the last four weeks it’s been poo every day. We don’t know how much movicol to give. Nobody ever gives a straight answer on that I find. It’s guess work!

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