Update...progress hopefully!

[Robinia]

For anyone who remembers me crying 😭 with my children about my son’s painful situation (severe impaction and in severe gastric pain when trying to take movicol and failed disimpactions and enemas)...he’s been admitted to hospital for 5 days by his wonderful paediatrician. We have also had excellent support from his continence nurse who has co-ordinated care amongst the health professionals involved. I phoned the ERIC helpline last week and had really constructive advice that helped me feel more confident in making health professionals listen to my son’s distress.

I don’t know what the outcome will be (hopefully a successful disimpaction by some means and a reduction in his pain) but at least his pain and distress are being recognised.

Thank you to all you wonderful parents for listening. I find it helps to share with people who understand the pain and worry associated with these problems.

Sending you all healing vibes 🤗

[SallyandPaul]

Marvellous news I really hope that he gets the help he needs. Thanks for letting us know and please keep us all updated. Xx

[Allyem1976]

Hiya, so pleased you seem a bit more positive. Haven't heard from you? My daughter was admitted yesterday again after vomiting since Saturday. X-ray showed she was severely impacted again. Been building up since we were last admitted 3 weeks ago. 4 sachets of Movicol not enough so now the plan is start with 10 and then down to 8 or 6. Still in hospital as she is still vomiting. Had enema yesterday to unblock but only lower bowel not upper. Hoping the rest will unblock when we get her back on the Movicol. It's so stressful. I haven't slept in 3 days. I am physically and mentally exhausted. Had to take time off work again and I am a single parent so this is hard. She is missing school, friebds, a school trip tomorrow and its her birthday tomorrow! No one quite understands the impact all this has except you guys. So glad I am a part of this amazing family/community 😊😊😊😊😊😊😊😊

[Robinia in reply to Allyem1976]

Argh, so sorry to hear that. You sounded really positive after you spoke to the paediatrician when she was last in. Sadly these kids seem to have more than their fair share of suffering. I really hope they help her. I wonder if her vomiting is connected with the impaction or the medication or a combination. My son definitely has gastric problems relating to all the constipation medication he has taken. Let’s keep in touch 🤗

[Frustratedmum1 in reply to Allyem1976]

I'm sorry to hear about your little one. It is so hard when they are in hospital. But hopefully they will have success in the discompaction. All we have is hope and belief we will get them better. Take care and try and look after yourself

[ivory_47]

So great to hear this, thank you for sharing and good luck! X

[Yippieyay81]

So pleased to hear your son is getting the treatment he needs x

[Louloubelle23]

So pleased for you! Hope it goes well and he gets the help he needs. Good luck 🤞

[Frustratedmum1]

So glad to hear your son is getting some treatment. Hopefully it will help with his pain. Thinking of you and I wish both of you all the best