Biofeedback/Evelina/Great Ormond Street

[Robinia]

Hi, Just wondered if any of you had come across biofeedback bowel training for children? My son has been unable to do a normal bowel movement for 9 months now (age 9.5 and in nappies) and we are seeing gastroenterologist in couple of weeks and I’m thinking of asking him to refer us to Great Ormond Street or Evelina but would be helpful to know if anyone who’s been to either and what their experience was. Gastro will probably refuse but I really want to know what’s out there in terms of specialist support and from what I’ve read about biofeedback I think it might help him but for kids it seems to be for urinary rather than bowel. He’s on high dose movicol at the mo coz he’s been impacted again recently but I’m hoping to taper it down to maintenance dose after the week end. The continence nurse said the movicol he is on makes his poo like soup! Hence why no normal bowel movements but when I’ve tried to reduce it he instantly gets blocked again. At the moment his poo is like wet sand. He’s also in extreme gastric pain which the movicol definitely makes worse. I put him on low fodmap dairy and gluten free diet a while ago and that has helped the pain but the increase in movicol has exacerbated the pain again....AAAAARRRRRRGGGGGHHHHH

Oh and he sits on the loo twice a day for 10/15 mins and nothing comes out 🙄

[Luella19]

Have you tried/been prescribed a stimulant laxative at all to use with the movicol? My daughter was given senokot (in liquid form) by a consultant gastro to use along side movicol which allowed us to lower the movicol and get more regular routine going. It made a huge difference.

[Robinia in reply to Luella19]

Thanks for your reply ☺️ He’s had Senna, suppositories, enemas both low and high and high dose movicol and sodium picasulphate. The picasulphate gave him gastritis and the Senna has never worked. I’m loath to try Senna again as he is still recovering from gastritis. He’s impacted at the moment and on 12 sachets of movicol. He can’t have picasulphate again as it damaged his stomach so much last time (been recovering for the last 6 months). I’ve read of quite a few people on here having success with Senna so maybe when the current impaction is clear (god knows how that will happen🙄) I will ask if it’s ok to try it again but only if it doesn’t irritate his stomach. The gastritis gave him dreadful pain and sickness and weight loss so I definitely don’t want to trigger that again. At the moment he’s feeling sick and pain coz of the movicol I think, he seems to be recovering from the gastritis with the help of a non gluten non dairy diet. Thank you for replying 🧡☺️

[Luella19]

Really sorry to hear of the hard time you are having, it’s really tough and unfair. You sound as though you are on the all with everything though and trying to find solutions. I can’t offer any advice on bio feedback as have no experience of it.

I hope it is some comfort to know you are not alone with poo trouble! It’s been a hot topic of conversation in our household for many years now but generally not something that is discussed.

I really hope you get the referral your son needs to end the pain for him x

[Robinia]

Oh thank you, your reply means so much. It helps me so much to know I’m not alone and you clearly really understand. It’s such a taboo and there’s so much shame attached to struggling with what is an essential bodily function. At least I feel I’m supporting my son better emotionally now, I think he knows I’m totally on his side and will keep fighting his corner, even if it means pushing for second opinions, travelling the country etc. Thank you for taking the time to reply. I will go into the gastro apptmt this week taking strength from all the great parents on this site who are doing such a fantastic job in trying circumstances ☺️

[Luella19]

Good, I’m glad this forum helped (helped me too) and good luck 😉 xxx