Dizzy?

[CM0301]

Sorry for posting so many questions at the moment.. feel at a total loss. So as well as the extreme pain my daughter is also complaining of feeling really dizzy.. is this linked?

[StellaA]

Is she on painkillers as well as movicol?Constipation, like any abdominal pain can make you lethargic, less movement, less pain but being active is important for bowel function.

It can be a vicious cycle.

[CM0301 in reply to StellaA]

No, not pain meds and in agony... Really doesn't want to move.. has spent most of day on sofa..

[Yaleamanda]

Is she drinking enough?

[CM0301 in reply to Yaleamanda]

No, definitely not I'd say but refusing anything more than sips due to the pain

[Yaleamanda in reply to CM0301]

That's probably why, try things like ice lollies, fruit etc.... She is at risk of dehydration and ultimately will be making herself feel worse.

[CM0301 in reply to Yaleamanda]

I'm trying my best.. she just doesn't want anything.. Will keep trying

[Robinia]

If the pain is intolerable they can admit her and disimpact on the ward. Getting the fluids in is crucial. Alongside the movicol. You know your child. I re- read your posts and sounds like it was a consultant who set you back by telling you to give her one sachet a day. What ridiculous advice. If you are concerned about her well being and don’t think you can manage the disimpaction at home then contact your GP or take her back to A & E and kick up a fuss. Basically she needs a full disimpaction but sometimes they do an x Ray and depending on where she is loaded they can administer an enema to help get things moving. That is as all as the movicol, not instead of. Sometimes they prescribe Senna or picosulphate alongside the movicol as well.

[CM0301 in reply to Robinia]

Thanks, yes that's definitely not helped the situation at all. I am waiting on a call from our GP..

[Robinia in reply to CM0301]

Don’t be afraid to be very direct and to the point. I’ve really had to fight on behalf of my son. Good luck!

[CM0301 in reply to Robinia]

I know.. I will do my best .. she's hysterical just trying to get this dose down..Sorry for going on, I appreciate your words of wisdom and support.

[Robinia]

I’ve literally been where you are now. Really wishing you all the best xx

[CM0301 in reply to Robinia]

Thanks, our GP sent us into the Children’s Assessment and Treatment Unit at the other local hospital..

[Robinia]

Hope it went well x

[KAW111]

I hope your daughter is managing ok....its been a few days since this post. I really feel for everyone posting. I really don't feel any better knowing we are not the only ones experiencing such complications around toileting. It seems one of the biggest complications are actually linked to conflicting, delayed and inconsistent advice from different health professionals

When I went through disimpaction with my son last year, we also struggled to get enough fluids and all the Movicol and Senna in him. I put Movicol in lollies, jelly, squash and chocolate milk. Senna in blackcurrant Ribena. We got up to 12 sachets and 17.5ml Senna over nearly 3 weeks and still didn't quite seem to be at the rusty water stage when he developed abdominal pain that paracetamol and ibuprofen didn't help, so after a lack of advice from gp, continence nurse and 111 dr I took him to a&e, and the childrens unit admitted him. Within 24 hours he was finally xrayed and scanned which showed disimpaction had been completed. This offered reassurance during an extremely stressful period. And we were discharged back to a pediatrician. Not that he has been massively helpful. And same, from the high dose of laxatives the hospital doctor advised just to use 10ml Senna. After 4 months of tweaking Senna and not feeling like we were making progress or getting any coherent advice, I elected to put my son back on Movicol as he was getting constipated again. Then last week he refused to take Senna anymore (he finds the taste completely intolerable now). But incidentally after a wobbly week, on 2 sachets of Movicol he has had 3 successful poos with no soiling and no wetting for 3 days. This feels short of a miracle.

Please look up Kelly Mahler and Kerri Hemple - Interoception, toileting and Leakky Gut! xx

[KAW111]

I can't spell....Kerri Hample - The Leaky Gut!!

[CM0301 in reply to KAW111]

Thanks for your message. She is still in a ridiculous amount of pain, I honestly don't understand how health professionals feel it is acceptable to leave a child in this state. I spoke tonone of our GPs yesterday who basically said the doctors on Tuesday said she wasn't impacted why aren't you believing them, to which I said well the doctor on Sunday said she was. She basically made me feel like I was causing additional stress and doing the wrong things by taking my daughter to hospital - but I am at a loss as to what to do when my child is spending most of the day crying out in pain. I haven't dared ring the GP today even though the pain seems worse. She has been hysterical at bedtime and bow saying that she can't wee even though she needs to. I am desperately trying to get a private scan arranged. I will have to ring the doctor again tomorrow, we can't keep going on like this. She is saying she can't live with the pain- no child should be saying things like that.

[Starryeyes2000 in reply to CM0301]

I am sorry to hear what you are going through. There are so many children suffering, and it seems as you say, with conflicting advice from professionals. I won’t go into detail about my daughter’s situation but she had intolerable pain, headaches, dizziness, nausea, very low mood, desperation, disconnection with us. She withdrew. After months of GP appts that always said she wasn’t constipated, we arrived at A&E, they scanned her, she was impacted. Following that, she could no longer wee. We went privately after this and saw a paediatrician. He believed the bladder issue was linked to the bowel and so we carried on for weeks trying to disimpact her. He then referred us to the Evelina where we are under Dr Wright for bowel and bladder. Her treatment includes self catheterising and bowel irrigation daily. This won’t be necessary for everyone but after I think about 2 weeks of successful bowel washouts a cloud lifted. The headaches, sickness, fear are gone. She’s physically active again and relaxed. We’ve no idea if this treatment is short-term (a year or 2) or possibly more permanent, but she’s enjoying life again and her attendance at school is much improved. My advice to you is, you know when your child isn’t right, I was too passive for too long, confused with advice that didn’t match what I was seeing at home or conflicting with another professional. If she’s still very bad today, I would try and get her seen today. If your child is feeling so desperate and low, they need to support you both. Wishing you all the luck and lots of support xxx

[CM0301 in reply to Starryeyes2000]

Thank you for sharing. Cx

[KAW111]

I am so sorry to hear this. I agree. It's so horrible not knowing exactly what is going on in our child's body to cause the pain. I was in the same place last December. I feel fortunate at least we were able to get the xray and ultrasound, which offered some reassurance at the time.

As for these physical examinations....I believe my son was impacted for a very long time and the physical examinations gp and consultant did were insufficient. I do query whether my son is again. The paediatrician referred my son for an mri just to pacify me last month - he insisted he had no concerns. Unsurprisingly a letter arrived last week saying a significant amount of stool was detected in the bowel, but that we should wait until our appointment at the end of April to discuss moving forward. I would like to think if this means he is impacted the pediatrician would advise immediately to disimpact, supported by the continence nurse...... but I worry this is just another delay to taking any action. Equally, I cannot go through a repeat of our last disimpaction experience without knowing he is definitely impacted, as it caused a lot of distress, time off school, work and my gp referred me to social services for good measure, questioning what I was doing. Doing something I was, as we could not continue as we were and despite being 'involved' neither the gp, school nurse or continence nurse were forthcoming with advice. I called the Eric helpline and followed their guidance........

[CM0301 in reply to KAW111]

Sorry to hear you've had such a tough one too.. It's the not knowing for definite one or the other, so I don't know whether to put her through the stress and distress of a disimpaction - and given her pain, her struggles with eating and drinking due to pain and her understandable low mood after months of feeling unwell it would be distressing..but obviously if she impacted then I would do.. They have currently just said to keep her on 1 or 2 sachets a day and review her bowel movements and adjust as needed.. but no one seems bothered about the pain.. anyway.. sorry for going on..

[KAW111]

Poor love....yes my son displays very challenging behaviour, bad moods etc when a poo is imminent....nausea, tummy aches, headaches.... too.....so definitely stay on the Movicol, I wish I had done that when we were discharged from hospital, just as advised through Eric resources.

My son's diet is not great, he is very rigid around eating. This does not help. I have been using a microbiotic powder and mixing it up in jam, choc spread etc. I do wonder if it is helping. There is a lot of evidence around the importance of maintaining gut flora and the positive impact on constipation, mental health and beyond.

I realise this doesn't help you right now though and how important it feels to have recent and accurate scans. I too feel very conflicted. It's just horrible situation for you both.xx