9 year old son - ongoing constipation / Senna alternative

[KAW111]

Hi everyone. So I arrive on this site like so many other mothers. Feeling desperate and alone with years of toileting issues.

Our situation sounds like many others. My son never quite grasped toilet training when it came to poos and 6 years on the situation is the same. A perpetual cycle of withholding, constipation, day time wetting, anxiety, Senna increase, more soiling. He is likely Autistic with sensory processing differences, including interoception and oral defensiveness (limited and rigid diet choices). Under a Bladder and Bowel service and paediatrician but input from them is minimal, inconsistent and certainly untimely.

I have to mix Senna in choc milk as my son cannot tolerate the syrup alone. Even this is difficult and getting him to drink it has now come to a halt. The tablet is also too big for him to take. Currently re introduced Movicol, to get things moving a regular - with limited success, in that it has got things moving at least.

Pharmacist has suggested Lactulose. My son says he now experiences a pushing sensation. I don't know whether to just switch to lactulose to see what happens. I wondered what others had experienced with this?

I also wonder what alternative stimulant to Senna people may have found to work.

Thanks for your time.

[Yaleamanda]

Senna will work best alongside a softener such a movicol which is far more effective than lactulose. Water is key and plenty of it. Senna can cause cramping but is very good at stimulating the bowels, the movicol will soften the stools.

[KAW111 in reply to Yaleamanda]

Thank you Yaleamanda for taking the time to reply. I think we need to stay on the Movicol for sure. It's just the Senna, he is refusing to take it. I will see how things go without it for a week. It is very difficult to know if it is over stimulating and not giving him enough time to feel like he needs to go or if it is impaction causing leakage. If he doesn't continue to have regular BMs I will have to reconsider. Next Paediatrician appt not until the end of the month. Continence nurse has stopped communicating.

[Yaleamanda in reply to KAW111]

Impaction will cause leakage. you need to up the movicol, work up to the maximum dose for his age and stay there until you reach what looks like rusty water looking poo. Remain there for a few days to be sure that the impaction has gone then reduce down very slowly ie one sachet every three days until you reach a suitable maintenance dose that produces type 4 stools on the Bristol stool chart. Lots of water too alongside the movicol as this does not count towards the daily allowance of liquid. There are other stimulants you can get from your drs if the senna can't be tolerated.

[KAW111 in reply to Yaleamanda]

We did this in december - highest dose of Senna and Movicol, after 3 weeks he ended up in hospital with abdominal pain and I was referred to social services. Xray and ultrasound were done showed no impaction and dr advised just using Senna. I reintroduced Movicol 2 weeks ago as my son went 5 days without a proper bowel movement. Went up to 6 then reduced to 2 as things are now moving again and if we are going to do full disimpaction again I want it under medical supervision, it was very traumatic last year and caused my son a lot of distress. He is currently now doing type 4 stools.

[Yaleamanda in reply to KAW111]

I would go back to your Dr and say you need to disimpact. Have you been referred to a paediatric gastroenterologist, if not push for a referral there too, nice guidelines stipulate this and drs should be following this.

[Yaleamanda in reply to Yaleamanda]

Also make sure it's paediatric gastroenterologist rather than just a paediatrician.

[KAW111 in reply to Yaleamanda]

Good idea. I am not happy with the healthcare my son has received at all and have already asked for a second opinion from another pediatrician. I will request a referral during our upcoming appointment. It's just all so slow. I am beginning to wonder whether we need to go private, although it's become so complex now I am not sure this is a realistic option without substantial finances!

[Yaleamanda in reply to KAW111]

Tbh I'm not sure you would get any better care or answers by going private unless you are able to seek out the best practioner in their field. Have you contacted Eric directly? They are very good and genuinely know their stuff.

[KAW111 in reply to Yaleamanda]

Yes I managed to get through last year to the helpline and followed their advice re. Disimpaction as soiling and wetting was out of control and I was getting nowhere with gp and bladder and bowel service. I have exhausted all other advice. The only reason my son is back under the pediatrician is because of the hospital admission - but this is the same dr who 18mnths ago tried some Senna the discharged us saying it was behavioural, do a parenting course and request school to assist with accessing SEN support.....I said 2 months ago during an appointment with him I was concerned about impaction again because the wetting was increasing, so to pacify me he did a physical examination, stated he had no concerns but referred for mri scan as a process of elimination to make me feel better, when I persisted about interoceptive difficulties. Unfortunately my son was unable to tolerate the scanner noise so didn't stay in for more than a few mins but amazingly I received a letter from the pediatrician advising some images were captured but nothing untoward was picked up and that we would discuss further at the planned appt. He did mention there was significant stool seen in the bowel but I don't know if this means he is impacted or not - surely if he was we would be advised to disimpact immediately rather than wait nearly 2 months for the next appt to discuss?

[Yaleamanda in reply to KAW111]

Yes that definitely means he is impacted, it sounds like you need to disimpact properly.

[KAW111 in reply to Yaleamanda]

I think I know this deep down but feel very conflicted without the agreement and support to proceed from the dr and nurse, including access to scans to confirm that disimpaction has properly been completed. Do you think perhaps it wasn't completely cleared back in december? I wasn't convinced because my son was still passing thin gravy rather than what I think should be rusty water. But I trusted the hospital dr when he said disimpaction was complete and that Senna would be ok moving forward.

[Yaleamanda in reply to KAW111]

It's always best to keep on an osmotic laxative for maintenance dose along with the senna. How quickly did you reduce the movicol down when you did disimpact? If there are still stools within the bowel then it's likely he is still impacted.

[KAW111 in reply to Yaleamanda]

That's what I advocated for, as per Eric advice. So we were admitted for 2 days when he was on 12 sachets of movicol and 17.5 ml Senna. The hospital discontinued movicol and upon discharge advised to continue10ml Senna daily - which I increased periodically when he had not had a BM for 2 days to keep things moving. Then as I said, my concerns about impaction fell on deaf ears so I reintroduced Movicol about 2 weeks ago , up to 6 then down to 2 sachets which i will continue along with 10ml Senna. But now he is refusing the Senna.

[Yaleamanda in reply to KAW111]

Sounds like you need to disimpact properly with movicol.

[Teddy500]

Things my son has....chicory root inulin - both the plain powder form which is almost tasteless and the syrup (which is delicious), fig rolls, Ella's kitchen prune puree mixed with jam in his sandwiches and anything else I can hide it in, Lindwoods ground seeds (flaxseed and chia seed) disguised in his weetabix. Best wishes 🌺

[KAW111 in reply to Teddy500]

Thanks Teddy500. He used to eat fig rolls but now rejects them. I have milled flax but because of the limited food he eats it is difficult to find things to hide it in! I mix up daily microbiotic powder in jam or milk - I did not know about chicory root inulin. He definitely needs more fibre in his diet. Is it a fine white powder? My son will detect the smallest of change in texture of his safe foods!

[Teddy500 in reply to KAW111]

Hi, so I would say the powder is undetectable and sort of dissolves (Bioglan one), slightly sweet but not really any flavour. The syrups are either plain - like golden syrup or chocolate flavour with added coco, from Holland and Barratt, all very high in fibre so if anything you have to be careful to not have too much. They also do a children's flavoured powder drink but it's meant to be like drinking fruit squash and very sweet. Best wishes 🙂

[KAW111 in reply to Teddy500]

Thank you. I am going to try the syrup. I tried a new rice crispy cake combo with flax, oats, chia, almond butter, maple syrup and dates. Normally he rejects all my healthy alternative snacks with sneaky good stuff but I just told him it was a choc fudge ball and he has munched away. Small win!

[Teddy500 in reply to KAW111]

That's great news, it's so satisfying sneaking healthly food in without them realising, my son has been eating cauliflower hash browns for the last few weeks, has no idea there's cauliflower in them 😊

[KAW111 in reply to Teddy500]

School nurse has offered to refer to dietitian too. I am very mindful of supplementing and the dangers of accidentally adding too much fibre. Only took 6 years so fingers x we might receive some useful, person centred advice !