Firstly apologies if any of those are spelt incorrectly. I just wanted to know if anyone has any knowledge or experience of any of those?
My 13 year old has been ill a year now. Poor care from a useless paediatrician (can’t be seen by anyone else as waiting lists too long) don’t want to drip feed but don’t want to make it too long but this is briefly the problem.
Started with awful diarrhoea. Then pain. Went on a while, very bloated. Stool sample all clear. Bloods clear other than low iron. Waited for paed. Then told it’s diet, followed 4 weeks off dairy, then 4 off wheat, then 4 off fructose. No change other than less pain on no wheat. Went back, did X-ray showed impaction, then found out he has a prolapse. Had movicol then failed op to repair prolapse
Left again by paed but chased the last stool sample done which was ocotober then showing calprotectin levels of 349, GP went back to paed demanding look into it.
With me so far? So he is booked in a few weeks to have small bowel mri plus OGD. I don’t trust the paed at all and don’t want him missing something and want him to take biopsies (still haven’t clarified this)
Symptoms are :
Constant mucous that comes out both with stools but on its own and he thinks he needs a poo but is just mucous. Very windy (both ends) gets pain but not as bad since the movicol. On the toilet up to 4 time’s a day. Tummy very distended, looks like a beer belly. Hasn’t lost any weight tho. Low iron (hasn’t been checked for ages) generally quite tired but ok. (He has SN so this isn’t helping). Still has the prolapse which bleeds. (Well I’m told it’s the prolapse bleeding as apposed to blood in the poo). He always has bruises but he is hyper mobile and quite clumsy and he doesn’t know where they come from. Not loads but he will always have generally one that looks quite bad on him. I don’t believe he has grown much at all in the last year or so (need to check with hospital as I only have this written done twice recently and they don’t write in his red book). Has been suffering reflux for the last 2 months and Gp has given gaviscon.
He had a breath test and that was negative. He was tested for that hylocampbactor or what ever it’s called and that was negative.
The calprotectin obv shows high inflammation and the only things that come up on google are the above mentioned. Blood for coeliacs came back negative but coeliacs society said that you can have false negatives and the GP agreed.
Any experience or any thoughts on what it could be and how these things are diagnosed and treated? I know no one can diagnose him on here but I’m very worried about getting no where and want to go armed when we go into hospital.