Hi, I'm looking for some help/advice on constipation. It's a long one and maybe a but tmi so sorry in advance!
My son has just turned 5, and since he was 2 weeks old he's had trouble with constipation, we had to ring our midwife about it as a health visitor wasn't assigned to us yet. He would never have proper poos in his nappy, just skid marks, raised this with the miswoce and health visitor and she said it's normal, as long as he has some sort of marks/evidence of movement, as first time parents we just went along with it.
Fast forward to toilet training, at around 2 and a half, still the same marks in nappy, (which again, told was normal) and on laxido (been on and off since about 9 months - no real change) very bloated stomach which we just put down to a pot bellied toddler, one day he was sitting on the toilet and pooed, and it was very big, he was in a lot of pain, I had his nail marks on the back of my neck and was bleeding a tiny bit where he was holding on to me - his first real poo! After that his stomach was completely flat, and he was like a different child, more energetic, less lethargic. This is when we first realised that somethings not right.... He was then put on lactulose along with laxido, still the same marks in underwear, changed to docusate and that didn't even make anything happen, suppositories worked and these were the only real poos he was having.
We were then referred to a peadritrican, basically said its all in his head and put him on all the other meds again (even when said they didn't do anything.) at about 3 1/2 he was put on sodium picosulfate, 5ml a day, which again, did nothing so it was upped to 10ml twice a week, we've also been told that 10ml.is an adult dose. This medicine is the only thing that has worked, he has had a blood test as his dad's mum is coeliac, that came back negative, we've been refused scans and all other tests as doc thinks it's all his head.
Back in September, we gave him 10ml sodium picosulfate as usual and nothing happened within the 12 hours it usually works in, gave him another 5ml, again nothing, and then another 5ml, again nothing, rung 111 and told us to go down to out of hours, went and he gave him another 10ml, we talked and I felt he actually listened to our concerns, he mentioned Hirschsprung's disease which he is now about to be tested for, this gp didn't get why he was having no tests and just been put on laxitives for basically his whole life. (had another 10ml and it finally worked, 40ml of an adult laxitive worked on a 4 yr old!)
Peadritrican was not happy about this and just kept telling us it's all in his head but go along to the hirschsprung's test to rule it out, and sent us to a toilet training specialist, went to that appointment and she basically told us she can't help as it's not a toilet training issue, it seems a medical issue if it's been there since birth.
New appointment last week with a gastro specialist, he's put him back on laxido and 5ml sodium picosulfate every day instead of the 20ml it was upped to twice a week, also in May he will go for a week in hosp where they will just give him loads of laxitives to see what works. We started this new regime and on day 4 he was sick 4 times and screaming in agony that his stomach hurt.
Im just looking for advice if this could be all in his head or an actual medical issue that's being ignored, I'm not happy with him being on so many laxitives for so long, and I fully believe if we didn't give him any for 3 weeks, he wouldn't go to the toilet for 3 weeks. We've sat down with him and talked to him about it and he's even said himself (and told doc) that he can't feel when he needs to go unless he's had medicine. I feel our concerns are not being listened to and the peadritrican has jsut out it down to that it's all in his head, but how can a baby have the knowledge to hold a poo in? He hasn't even had any allergy tests or scans.
Sorry for the essay! I'm just going out of mind a bit.