DS age 7 abdominal pain V&D for 6wks

[Cocofluff]

Up in the middle of the night as so worried. DS has always been a bit pukey (I though he was just a bit sensitive) but for the last 2 months his symptoms have got much worse. 6wks ago I thought he had a tummy bug but he just hasn’t gotten better. In the last three weeks he has been getting abdominal pain he normally circles his whole tummy to say it hurts all over. Sometimes it’s more painful at the top (under his rib cage) and sometimes in the bottoms right. The pain gets much more intense 20min after eating. He is writhing around the floor groaning.

He normally is a well child with a high pain threshold who doesn’t make a fuss ever. However this is making him really upset and ill.

I have been to the GP four times over the last two weeks.

His blood tests have come back as normal no sign of inflammation or infection. We are waiting for the fecal calprotectin test results. Dr thinks it could be another week or so. Calpol is no longer working for the pain but dr said nothing else can be offered at the moment as to avoid ibuprofen as can irritate the stomach. We have been dairy and gluten free but gp today said as the pain is getting worse she doesn’t feel this is responsible.

I was worried about gall bladder and appendix but after checking him over she said she didn’t feel this was a problem and also his blood didn’t show any infection and showed his liver working well.

He has lost 7lb in two weeks.

I’m just so worried about him. Warm baths water bottles and tummy rubs are not helping. I just don’t know what else to do. Dr said we have to wait for the fecal test to return and if that’s inconclusive then we will be referred to the gp.

Is this normal that a child is left in pain for so long before being referred? I’m just so desperate to stop this pain for him. Anyone been through this and have any idea about what could be causing this?

I have also bought a book to read with my ds called "what to do when you worry too much" by Dawn Huebner

It's helpful to rule out any anxiety reasons a child might have abdominal pains. I was clutching at straws with this I know and going through the book with my son reassured me that he hasn't got any anxiety. Although it seems to help me with mine (worrying about him) so we are going to compete the book. Might help someone else following the same path as us looking for answers x

miss Julia I did read up on chrones but I thought the blood test and stool sample would have shown this up? Is this not the case? How would we get test for this?

Also another thing I tried was to give him some Ovex on the rare possibility he has threadworms. It didn't work but I did read they can go undetected and cause pain (in rare occasions) but it didn't work for us.

OK I've now seen that chrones can have false negative blood and fecal results I'm concerned. My ds has pain in the lower right hand side, some blood in bowel movements, abdominal pain, acid reflux problems, nothing is easing his pain 24hrs a day it flares up and down.

However his blood test and fecal calprotectin test came back as no inflammatory markers so I thought we didn't have to worry about this. How would you suggest I go about getting his appointment moved forward. At the moment we are looking at a months wait.

I called the secretary of the consultant and although sympathetic she couldn't move us forward. She suggested going back to A&E if pain gets bad.

Last time I did that I caught flu that had me in bed for 9days. Plus ds was dismissed and told to wait for the results of the tests.

I've checked going private and initial consultants around here are £350 to £450 for the first half and hour with tests being additional on top. They also don't have access to ds medical records so I'm guessing will start re testing what we have already done. How Can I get the nhs to bring his appointment forward?

Phoning the Consultants secretary and asking to go on the cancellation list might be worth trying.

Has appendicitis been ruled out.
I would go back to a and e first thing tomorrow (quieter no queues at 8am on a Sunday)

Appendicitis was only ruled out by my gp as she said it would show signs of infection in the blood test ☹️ I just don't know what to do to help him. The secretary said she couldn't put ds on any waiting list. I think I will end up having to go back to A&E bit will try a different hospital. Lots of the family sick with a flu bug dh and other dc so can't take him today (unless things progress worse but then I would call an ambulance)

I'm just so worried that he is in constant pain but am I overly anxious about this as his blood and fecal results didn't show up anything? I just have a bad feeling about this ☹️

How are you doing coco?

My DS was very unwell for 6 weeks last year and deteriorated a lot with weight loss and stomach problems, he ended up being diagnosed with coeliac disease and other complications but it was a desperate time due to how quickly it came on.

I also looked into paediatric gasto services and rang secretary's etc. I found it difficult to get a private referral but they would take an NHS referral to a rapid access clinic unfortunately for my DS he couldn't wait that long.

What I did find out was that the large regional children's hospital always have a paediatric gastroenterologist on call. When he was at his worst we bypassed our local hospital and carried him straight into the paediatric A&E in our nearest big city.

It may vary depending on area but if I was you and I couldn't get any progress via your local hospital and GP I'd present at a major hospital with a paediatric A&E and explain he's in constant pain.

I know bowel conditions in children are difficult to diagnose but it's just not good enough leaving a child suffering.

Good Luck

I have just read this thread and I am shocked that your poor DS has been left in pain. It is awful. I can't believe it. I hope you find out what it is so he can hopefully get treated

Just here to give you a (()) I cannot imagine what the poor little man is going through. Hope you get help soon.

Hi thanks all for your messages. Well it has been an eventful few days.

I called the gp surgery on Monday to say I was going to go private and could I have a copy of ds test results printed please. Explained ds story to the receptionist and she offered me an appointment that day with a new gp. I took it thinking she could advice re procedures going private and I could get the printouts that I needed. She was good and recommended trying buscapan and if pain got worse go back to A&E.

Two days later after ds trying buscapan pain was increasing and he was looking really sick so we went back to A&E. On my way in I grabbed a leaflet on PALS and their complaints procedure. I had this visable in my hand every time I spoke to any drs or nurses. I don't know if this made a different or not but I had really good treatment. Nurses were really kind and we say a registrar dr. She was great and had ds scanned within the hour. She listened and wasn't patronising and ordered more intensive blood tests that would be back within 2 hours.

By the time we got back from the ultrasound a surgeon was waiting to see ds. He said after examining ds he didn't think he had appendicitis but would refer him to a consultant paediatrician that day. The registrar and surgeon both said they needed a paediatric gastro but they didn't have one at the hospital. So we waited 7hrs to see a paediatric consultant. We were eventually sent to the children's ward where we finally saw him.

He said he thought ds has erosive gastritis and abdominal migraines. He has started him on medicine for this that is an 8wk course. The abdominal migraine med is just to be taken if vomiting and dizzy and will make him sleepy so can't go to school when he takes this.

If in 10 days the pain hasn't stopped we need to come back to A&E.

In four wks we are to go back to the consultant and if needed possibly have a camera scope to see if there is any inflammatory bowel disease.

It was exhausting but I'm so glad we finally had the correct tests done and have an action plan of treatment

X

Your poor ds, what a rigmarole. Well done to you for pushing and persuing things like you have. You sound like an amazing mum

It sounds like you’re nearer a proper diagnosis. I hope the new medication eases his pain.

Glad you finally got some serious tests and investigations. Hope your ds starts to feel better soon.

That's amazing progress coco, you must be relieved to have the right people listening at last.

Yes I am really relieved to finally get him some help. Thank you all for your support it was really appreciated. I will update how we get on.

School attendance officer called me today to find out what is happening with ds. I was initially happy keeping them updated with everything but after her comments about I "need to send ds in every day and she would decide if he was sick enough to go home" I am frustrated. She seemed put out that I wasn't given any discharge notes last night (we left at 11pm) as she wanted a copy. I told her I did ask but was told the hospital would be writing to my gp and I would get a copy then.

There was no compassion that I had just spent a pretty traumatic 12hrs in hospital with a sick child and the last thing I wanted to be thinking about is school at that time of night even though I did. Can I now tell them I'm not going to be providing evidence at every medical appt ds is at or will I get into trouble? I also feel uncomfortable discussing ds private medical information with someone I don't have a good relationship with so would rather keep his private things private. Last time we spoke she told me how it can't be very serious or he would have seen the consultant by now I find her frustrating when I'm trying to deal with a difficult situation.

Write a letter of complaint to the school saying what you’ve said here (but in a letter sort of way).
They don’t have a right or need to see your sons medical records

You could ask them to get the school nurse to ring you and just deal with her.

I will do both good ideas......

I hope everyone looking for answers for their dc gets them soon. It's so hard when we know there are problems but keep being fobbed off.

Good tip thanks from Jammy George about finding gasto child's specialist on call at the larger hospitals. They actually told me they didn't have one and needed one for my dc yesterday. I will find a larger hospital if the meds don't work in 7-10 days so can access one from A&E

It's sadly true that if you get the wrong A&E team then your treatment can be vastly different. I also dressed smart as if I was coming from the office in the hope of being taken more seriously. It's so annoying if that tactic worked but sadly I think it did along with the PALS leaflet.

So pleased you've got some progress coco I've been thinking of you.

I'm by no means an expert but the bigger hospital we went to was the RVI (great children's hospital of the north) in Newcastle.

They had a paed gastro team on their website and a dedicated children's A&E. I'd assume some googling would reveal somewhere near you. My DS had blood results all over the place but his rapid weight loss was causing a lot of concern with the doctors so I really would push that point with them.

I'm hoping your DS improves with the meds. I've grown hardy now and have realised that sadly the people that shout loudest get results and now I'm not scared to kick up a fuss, it's remarkable the difference in treatment.

All the best x

Could write a very similar story with my DS. You have unfortunately been through the Dr's watchful waiting protocol. Finally got a diagnosis (symptoms losing weight, anaemic, rectal bleeding, pain, diarrhoea, vomiting) after much minimising at GPs. Local hospital pretty clueless until first test for inflammation markers. Finally referred to specialist Paed Gastro Team and Ulcerative Colitis diagnosed. Our school was very good (staff member with chrohns). Warned off using ibuoprofen as causes gastric problems. You need a paed gastroenterologist. Hope your poor son gets the specialist treatment he needs ASAP. Ask about medical needs tuition too if you think your son is falling behind, missing out on schooling.

My son is being investigated for coeliacs, his blood test came back negative for coeliacs because he has very low IgA, which makes the coeliacs blood test unreliable, I know my dr isn't able to order an IgA test. Hope you get answers soon

I posted this without reading all the feed. I'm glad that your finally getting somewhere