3 year old chronic constipation

[Laura1441]

My son was 3 at the end of August (he was born prem 33wks) we've been battling constipation since he aas about 6 months old. We have been on disimpaction for about 2 months we are on 8 sachets of cosmocol and 10ml sodium pica sulfate per day. We still haven't reached rusty water so have been referred to the gastro team at the hospital....how long this will be i dont know due to covid, however this means we have been discharged from the constipation clinic. We seen the GP and he says it fine to stay on the maximum dose until his appointment. (Which bothers me as its such a large amount of laxitive) his nursery are fab and very supportive but he is not getting to the point where is can hold it again and I feel as though we are going backwards. Has anyone had a similar experience? How did the gasto team help? Sorry for the long post but I'm getting to my whits end.

Thanks

Laura

[MinneyMouse]

Hi Laura, we are currently going through the same thing with our 3.5 year old daughter.she started nursery school in September and they are ok but not the best. My daughter has been in hospital for 3 weeks for the last disimpaction and is still on 8 sachets of laxido now 4 months later and feels like they’ve just left her because it’s easier for them.I really struggle with this too she hasn’t seen a specialist yet but I am taking her private for a second opinion as this has been going on for a year now. I’m not really of much help here but I just wanted to let you know your story sounds very similar to what we are going through and it is a high dose of laxatives and I worry about that too as she has actually lost the feeling of when she needs a bowel movement now so has had to go back into nappies which isn’t nice for her when she is potty trained. The drs tell me the feeling will come back as the laxatives reduce over time.

[Laura1441 in reply to MinneyMouse]

Its seems so many people have got to this stage and then nothing seems to happen. My husband is going to look into private medical care for him as everything seems to be taking far too long. When we visited the GP he just felt his tummy and said fine carry on until you are seen at the hospital. (Which at the minute could be months) until we have been seen at the hospital we have no correspondence with anyone which really bothers me. We are stuck at 5/6 and no sight of rusty water. Have you accessed private? How have you found it?

[MinneyMouse in reply to Laura1441]

We have her private appointment next week so can you let you know how that goes. The consultant she is under at the moment hardly see her and just tell me to keep her on 8 sachets but how long can she actually keep going like that is a concern to me.hour gp was absolutely useless told me to give her calpol for her stomach pain when she was clearly impacted and two days later we ended up in A&E with her so every time we have to see gp I dread it. I’m hoping the private consultant is different and he is a gastro dr not a general paediatrician consultant. My daughter was referred to the incontience team three teams and they kept rejecting her referral because she’s under a consultant but they’ve finally accepted her now but I’ve still not heard off anyone there. It does seem it depends where you live too as to what support you get.

[Laura1441 in reply to MinneyMouse]

Yes thats very true. We are in stoke on trent and the care we have had starts off well then seems to fade 🙄 we got discharged from the constipation clinic as we had been referred to the gastro team so everything has to go through the GP until hes seen in hospital. I did have a look on out local Nuffield website and the gastro consultant there is also the gastro consultant at the main hospital. They told me that it would be 4-6 for an appointment but nothing yet. Please let me know how you get on. Fingers crossed we start to get answers soon... its not fair for them to be in pain like this.

[MinneyMouse in reply to Laura1441]

It’s not it’s so upsetting their only little still and they’ve been through so much.you’d think the incontience team would stay involved until you’d seen the gastro dr he might still want them involved when you see him. That happens a lot that it is the same dr that will be on the nhs.we live in Birmingham but taking our little one to London so it will be a different dr. It’s been a whole year of chronic constipation now and it’s not improved at all so will see what they say

[Laura1441 in reply to MinneyMouse]

How did it all go? I've had my fingers crossed for you guys.

[MinneyMouse in reply to Laura1441]

Thank you Laura, it went well, it was definitely worth someone with a fresh pair of eyes taking a look at her. He has advised her laxatives must come down now after so long on 8 sachets she needs to get that feeling back of needing the toilet and the chance of having a more normal bowel movement so he is going to request to the nhs drs that they put a plan in place to move her onto a maintence dosage as it will take a couple of months to get her down a bit. He also suggested they do a shapes mobility test to see how fast/slow things are moving along her bowel but we will have to wait for that. In the mean time after we saw this dr she started having a new symptom and so now needs a colonoscopy done after Xmas, it’s just never ending but we will get there. How are things with your family? Any better?

[Laura1441 in reply to MinneyMouse]

We are exactly the same as we were. Im chasing up his gastro appointment, but as you know bounced from.one person to another noone actually want to see anyone. Weve already had an appointment at the hospital for something else so I know there are appointments there. Its just so frustrating. I'm so glad it went well, sorry its uncovered more things but the sooner they sort it or find things the better. I'm hoping that we get somewhere soon, he is becoming less frequent on the toilet for a poo too going a day with nothing or a tiny bit. I've still got everything crossed. Thanks 😊

[MinneyMouse in reply to Laura1441]

My daughter has days where she doesn’t go at all too despite being on so much laxatives it’s really odd. How many is your son on out of interest? The hospitals are not great and I feel they use covid as an excuse now.I just can’t wait to see the light at the end of the tunnel, I know we will get there but just seems so far away as I’m sure it does for you too. I still feel like there is a massive stigma related to constipation like it’s nothing but for parents with a child with severe constipation it affects everyone’s daily life. I hope you get your appointment very soon for him and they start to give you some answers. He can’t be very comfortable either if he is blocked up

[Laura1441 in reply to MinneyMouse]

My son is on 8 cosmocol a day and 10ml sodium picasulfate at night. But that doesn't seem to do anything to change his movements either. Yes the stigma is crazy, people seem to think your child is lazy then they poo themselves because they can't be bothered. We are very very lucky to have such a supportive nursery which has made it 10x easier for him and us.

[MinneyMouse in reply to Laura1441]

That’s really positive when you get a setting that will actually support it does help.it is a lot of medication to still have no significant bowel movement. Have they taken an X-ray at all or are you literally waiting for a consultant to see him? It is really stressful I do feel for you it’s like there’s no way out from it all but hopefully you will get to see the dr soon for some answers

[Laura1441 in reply to MinneyMouse]

All we have had is a zoom chat initially with the constipation nurse then a few weeks ago I demand the doc see him as he hasn't been seen by anyone physically. He said he could feel anything but doesn't mean nothings going on. If I get asked once more if I'm making it up correctly I'll scream too. So no scans, no xrays, no nothing. So we are waiting on an appointment to see why he's not at rusty water with everything he's on. And since he's been referred to the hospital he's discharged from the constipation clinic as he can't be under both. (Makes no sense) so I've had no contact with anyone. Xx

[MinneyMouse in reply to Laura1441]

How bloody frustrating, they won’t accept my daughter under the constipation clinic because she’s under the community nurses but the community nurses do nothing they don’t even see her regularly and they were originally only involved because she had a NG tube put in to take her medicines but I don’t see why your son can’t be under both as he needs the constipation support but a dr can review him surely if you took him to a gp that’s what they’d do? It’s really confusing isn’t it and frustrating. Can you complain to pals at all or someone like that if you’ve been waiting a long time now? These hospitals don’t rush themselves at all and these kids suffer in the mean time x

[Aethawk]

Hi Laura. Our GPS were no help, so took our 6 yr old privately and have poo nurses ring is monthly and after a yr the poo dr now rings. We believe he is disimpacted but without another marker test we don’t absolutely know for sure. However we don’t have accidents anymore and he has 6 mls pico every morning and goes about 7 in the eve. But poo is a lot of no. 6/7 with the occasional 5 once a week. I am keeping him at this level with the odd boost of meds once a week just to make sure, until jan to give his bowel time to shrink. It’s all very daunting. We still have arguments trying to get the meds for him from the GP, so have to get them to read the poo drs letter every time. Keep your chin up and keep going xFrom what I understand children need 1.5 litres water based drink every day and this certainly helps the clear out

[Laura1441 in reply to Aethawk]

How did you find the private medical care? Have they given any better advice than the drs or constipation clinic?