Advice please

[Jebewill]

At the end of my tether, any advice would be gratefully received, don’t know where else to turn. Basically, three years ago my daughter 13 suddenly started having severe stomach pain which was so bad it sent her into seizures ( never had a seizure previously) found out eventually it was impaction. We do the clear out up to 8 sachets of laxido. This has been going on 3 years with impaction coming back every few weeks. Monday the dreaded stomach pain started and ended in A&E 24 hours later with severe pain and violent seizures. My daughter was in absolute agony so the doctor prescribed sodium picosulfate so for the first time in 3 years had a proper clear out. Daughter drinks enough but will not eat veg, she now realizes things have to change. Does anyone else have any similar experiences or advice please? Cannot stand to see my daughter in so much pain. Thank you in advance

[SallyandPaul]

My daughter is now using peristeen a colonic irrigation system. A nurse came to our house to show us how to use it,she is eleven though and has suffered since she was three

[Jebewill in reply to SallyandPaul]

I’ll mention that thank you. Does it work for your daughter ?

[SallyandPaul in reply to Jebewill]

We've only been doing it a few weeks but works very well. She still has the odd accident and at the moment still takes medication as well. However she should be able to start weening off that soon. It's a natural thing to do and works very well.

Good luck

[SallyandPaul]

Just realised that your daughter is a lot older so would be fine

[Teddy500]

Is your daughter on a maintenance dose of Laxido? For example, with disimpaction with Movicol (my son aged 9) we're doing 12 sachets a day (the maximum) with Senna 2.5ml on a night, but when disimpation is complete (nothing but rusty water for 3 days) we will then reduce the dose to the amount he needs to have one soft bowel movement each day, even if that means he stays on Movicol long term to keep him going regularly and to stop impaction reoccurring. It may be that you're doing that anyway? Also 20g is the recommended amount of daily fibre for a 9 year old, can you roughly add up how much fibre she's getting in her diet. Apples, porridge or weetabix and fig rolls are good if she likes them? Have you tried the ERIC website and helpline too? It may also be worth checking if your local hospital has a Bowel & Bladder Clinic, if so ask for a referral, the York one is excellent, sorry if this is all stuff you know anyway, hope you get the help you need 🦋

[Jebewill]

Thank you so much for replying, we are going through the disimpaction every few weeks ( up to eight laxido a day until rusty water) for the last 3 years. Usually the blockage clears within around ten hours but we have had another night of agony. It is now Thursday and it’s been unbearable since Monday. She passed a lot of poo Tuesday in hospital after 10mg of picosulphate but came home and the pain started again, saw doctor yesterday and he can feel where she is still impacted it is just not passing after another 10mg of picosulphate. I think she needs further investigations but the doctors don’t think so, not sure if I’m overreacting!!

[halftime in reply to Jebewill]

You are not over reacting! Push for investigation. Gastro?

[Bambie83]

I’m curious to why you’ve only gone to 8 sachets with her? It’s just my daughter has that amount and she’s 4.5 years. Did the doctor advise you? Because she may need to have the 12 sachets and possibly a stimulant.

It’s sound horrible poor thing.

[Jebewill]

She’s 16 and refuses to take more than 8 sachets in one day, she does need more. It’s very difficult to keep an eye on her bowel movements as she won’t show me. Her consultant just advises one sachet a day but that definitely needs to be changed.

I’ve just found out through this site that she shouldn’t have had the picosulfate without a softener no wonder she was in so much pain. Thank you for the advice I didn’t know about a stimulant so I’m hoping we will now have a plan in place

[Bambie83 in reply to Jebewill]

Do you give it to her in batches or ready mixed? Perhaps you could mix it up all 12 sachets in a jug and get her to drink it through the day?

After disimpaction she would definitely need a decent maintenance dose - my daughter is on two a day and it’s taken us months of adjustment to find the right level.

[Skyfullofstars1]

Hi, I’m so sorry to hear this. Must be terrible for you all. Nothing worse seeing your children in pain. And poo trouble is just awful. I don’t know I might be repeating stuff you already know but my only advice is 1. If the medication is not working keep at the doctors untill you find what does work.

2. Exercise when possible

3. Remind your daughter to always listen when she needs to go and to never hold it in.

4. As much fruit and veg and whole grain foods and water in her diet.

5. Most importantly sit on the toilet (with a stool to support her feet if needed) after every meal for 5-10 mins.

My heart goes out to you. My little girl was a lot younger but similar story to yours. Not seizures but she would shake and stop breathing with the pain. It took us 3 years to eventually get her back to ‘ normal’. Her bowel etc was so stretched it would just fill up again and repeat the process. Now she’s on 2 movicol and 10ml docusate daily. The proper clear out was the turning point for us. I hope it is for you too. Xxx

[Skyfullofstars1]

Also the proper clear out I mentioned was a week in hospital ( just through the day) with picolax daily or possibly twice daily I can’t quite remember. This was after 3 weeks of aiming for 12 sachets a day. And we let there on 4 sachets and 3x 5ml docusate.

[Jebewill]

Thank you so much for taking the time to give me all of that information, I am getting nowhere fast with doctors. I am absolutely at my wits end after this week, I hope to never see my daughter in this much pain again so we will try anything. The consultant advice is one sachet of laxido a day. This is not working. Would it be better to give a softener daily rather than laxido ? The impaction triggers seizures, I’m sure if we can get the constipation under control it would improve my daughters life massively, thanks again for the advice x

[Jebewill]

Your poor little girl, that’s an awful lot for a little one but such a positive outcome, it has given me a lot of hope x

[Jebewill]

Again thank you to you all for replying, I’m so grateful for the advice. My daughter managed to open her bowels yesterday evening twice which meant a full nights sleep for her. She has just got up and had another poo but she’s in a lot of pain just after going which lasts about half an hour the pain is at a 10 after going, why would that be ? It eases a lot afterwards though. My worry this morning is anal fissure after reading online, would that be why she’s in so much pain after going to the toilet?

As for the maintenance dosage I’m so confused with the best thing to give ? Movicol and ducosate, how do they work together ? Thanks again 🙏

[Robinia in reply to Jebewill]

I’m concerned that your consultant is advising one sachet of laxido a day. Makes me think you need a different consultant. I think it would be good for you to contact the Eric helpline for some advice from a specialist nurse.

It sounds as though there has never been a full clear out. Far from it in fact. My son lived with chronic pain for the past 3 years and it’s only eased now because of finally achieving a full clear out followed by a very high maintenance dose to keep him clear (11 sachets movicol, 3 Senna tablets and 1 bisocodyl tablet daily).

It is possible she has an anal fissure. It is also possible that the impaction is causing the pain. Basically she needs to get up to 12 sachets and stay there. My son has it made up in a jug after school and drinks it through a straw while he plays on PS4 or watches TV to distract him. He also drinks 2 litres a day of squash as well as the movicol. It’s the flushing that helps shift the stuck poo. He’s had untold hospital clear outs. If you can’t manage it at home then she needs to be cleared out in hospital. They should do an x Ray to locate where the blockage is. If it’s low down then they may do a phosphate enema and if it’s high they may do klean prep via nasal gastric tube.

I’m concerned that the medical advice you are getting is duff and the impact in terms of seizures is so great.

If she is 16, 8 paediatric sachets won’t touch it. Has she been prescribed paediatric sachets or adult sachets? I really advise speaking to Eric nurse via the helpline. None of us on here are medically trained and you need to get some proper medical advice. You can also demand a second opinion at hospital. Whereabouts are you in the world? One of us might be able to recommend a hospital/ consultant

[Jebewill]

I’m in Wales near Swansea. The Consultant is a pediatric not a specialist gastro consultant, my daughter has just turned 16 so she is now transitioning over to adult services but to a neurologist for her epilepsy. The doctor has advised 10ml of lactose twice a day and no laxido is this ok? I will get in touch with the Eric nurses thank you

[Robinia]

That explains it- paediatric consultants vary greatly in their knowledge.

Definitely speak to ERIC who will probably advise you to get alternative medical input As in a different consultant or even a decent GP would be giving you better advice!

An x Ray would probably be helpful to understand better what going on inside.

Let us know how you get on with the advice from ERIC x

[Jebewill]

I spoke to an ERIC nurse and she was absolutely fantastic, this is the first time I’ve had proper advice from a professional in three years, this site is my lifeline and I am praying we can as a family get some sort of normality back again and my daughter can finally say goodbye to the dreaded bad belly pain that keeps coming back every few weeks. There are no seizures without the pain of impaction so if we can get this sorted it would mean my daughter would have the confidence to go off to uni, learn to drive and live her life normally like any other young person. Thank you so much for your advice it really does mean so much x