BOTOX for 2year old

[Leighcollins]

Hi I'm just looking for some advice...my 2 year old son has suffered severe constipation since he was born he's had a biopsy and a barium enima already.. He's on 8 sachets of movicol 30mls of picosulphate and 30 mps off lactolose DAILY through a nasal gastric tube. They have offered him BOTOX but I'm undecided as what to do, as I no a million percent he is not withholding!! One hospital agreed his not but Manchester children's disagree

[Robinia]

I didn’t know Botox was a treatment. That seems like such a high dose of picosulphate. I think that’s what messed up my son’s stomach and gave him gastritis. I would say go for a third opinion if you’re not happy with what you are being advised. I’ve found the doctors we’ve seen so variable in what they advise and their level of expertise and experience. Your son is so young and he’s been constipated since birth, have they established the reason for this? Could it be a food intolerance or allergy? What did the barium enema show? I’m trying a private nutritionist now as an alternative route. Movicol is great when it works but once you’re in the area of high meds and nothing working it’s really hard. My son had 6/7 enemas to clear him out and now he’s clear he’s completely lost bowel control and is wearing nappies all the time (age 9). The gastroenterologist I saw said it can take months for the bowel to heal. I wish you the very best with finding relief for your son. Hang on in there and if you doubt what they are telling you, find a specialist you trust who seems to want to get to the bottom of the problem, rather than just chucking meds at it. My heart goes out to you both tbh, let us know how you get on and what you decide xx

[Helen36]

Hi - this is not my area of experience at all but I just wondered why they want to go down this route? I know Botox is used for children with Hirschsprung disease sometimes so I wondered if the biopsy had suggested something related to that?? I have heard that even if it’s not Hirschsprung children can have a low prevalence of the cells that tell the brain the sensation of when to go. Has that been explored?

On the Botox, I know that the Botox effectiveness wears off over time so I guess that might make it worth a try but I also know that it can only be done a few times and then the doctors don’t want to do it anymore in case it has a long term impact on the muscle. Could it be they think the anus (I presume this is where they plan to do it) is not relaxing - consciously or otherwise?

Poor you though, my heart goes out to you. I have a two year old too (and an incontinent 4 year old which is why i am on here!) and I just can’t imagine how hard this is for you all. I agree with the person above, try and get a third opinion or even just a bit more help to try and weigh up the pros and cons. The ERIC helpline might be worth a call for someone to take it through with or who might be able to advise on the questions to ask.