This is a long one sorry!
DD(14) has been having tummy aches and nausea for a couple of years. We saw several GPs who didn't do much to help.
It got worse over a year ago and my daughter started getting extremely tired and lethargic much of the time. She started missing a lot of school with no energy and the nausea and tummy aches becoming more constant.
A new GP finally ran some tests including Calprotectin tests, the first of which was 1560. Small bowel Crohns was initially suspected by GP and Paediatrician.
She was referred urgently to gastro and after weeks of waiting, we finally heard from them. They'd referred her back to a paediatrician so she wouldn't get to see a gastro afterall.
It took a few months for an appointment with paeds. She did another Calprotectin just to make sure it wasn't still high. It was so she then referred us back to gastro....
Months later, she was finally seen by gastro who ordered small bowel MRI and Colonoscopy. MRI was fairly quick and showed some 'restricted diffusion' in Terminal Illium but nothing much else apart from 4cm ovarian cyst.
Bloods seemed ok although vit D was too low and some liver function raised.
She had her colonoscopy and upper endoscopy a few weeks ago. Nothing was found and no plan was put in place. discharged from Gastro with probable 'anxiety'.
I tried several times to communicate with the GP about her symptoms and the fact she was missing so much school.
They weren't interested and again nothing was prescribed to help nor was I given any advice on what to do. I was just told it was probably stress or anxiety again.
Since Friday, my daughter started have what looked like oil in her stool. It was bright , very light orange and it looked as if oil had been poured into the toilet. She had it even when not passing stool. It also stuck to the bowl and floated on the surface. This has been happening every day.
I initially asked the GP to make a note of it in her notes but yesterday, as it was still ongoing said I was concerned as it wasn't like anything I'd seen before.
He wrote back saying the colonoscopy was clear and that we should tell the gastro next time we see her. Well, we can't because we don't have a 'next time'. She's been discharged!
So no appointment was offered and he wasn't interested in me sending in a picture.
My daughter is in bed all day, constantly nauseous with tummy aches and exhausted. I found her flat out on the floor Monday after school as she was too tired to get onto her bed.
I have school on my back wanting to know what's happening and i don't have any answers.
I feel I have hit a brick wall and I honestly don't know what to do next.
My daughter needs help, whether it be for mental health (which we both dispute although she is really fed up and tired, or for something else but nobody will give us any advice including my GP.
I had made a complaint to PALS but nothing has changed.