to think the hospital should take us seriously now?!!

[SoCockneyItHurts]

So a bit of background....10 months ago my 8 year old DS (7 at the time) started to have diarrhoea, every day out of the blue. Left it for 6 weeks, went to GP who said to do a stool sample (all clear) and then wait another 6 weeks to see if it stops. It didn't so GP referred to hospital. Bloods done at hospital, show anaemia but otherwise okish I think. Hospital asked lots of questions and came to the conclusion that DS has "fast gut transit time" which means he eats then poops. We wasn't happy with that. Anyway the diarrhoea gets worse so we ask to be referred back urgently, more bloods done to rule out coeliac disease and Inflammatory Bowel Disease (which we believe it is) and again all clear apart from inflammatory markers being slightly raised but not enough apparently for DS to have Crohn's. Still anaemic but they don't seem concerned. Hospital still saying Fast Gut etc. In November DS got an awful anal abscess which he ended up in hospital with to have it lanced under GA. Absolute nightmare, they discharged us without a summary which I had to chase them for for 4 weeks! Info on summary incorrect and no follow up was made. Went back to consultant (different hospital, same Trust) who still insists fast gut transit and says that kids always get anal abscesses!! Want to scream at this point. Meanwhile my poor son is having severe diarrhoea up to 5 times a day and his abscess site still not healed properly and he is having bad stomach pains after eating. 10 months this has been going on for!!! Even his school are concerned about his tiredness in school. And then today it looks like he has developed another anal abscess! It's a hard, red and very painful lump under the skin right next to his anus To say I'm devastated is an understatement. He's in pain again and so scared of going through all of what we've been through over the at 6 weeks again. He's already missed 3 weeks of school so far this academic and now it looks like he'll miss more. But part of me really hopes that we'll get taken seriously now and they'll investigate further and hopefully diagnose something! It's a nightmare.....my heart utterly breaks for him. The psychological impact from the diarrhoea alone has taken its toll and now this again! Has anybody experienced anything similar? Or can you please offer any advice? Thank you if you read this far :(

[SoCockneyItHurts]

No ulcers Rainbow.....hospital asked about that. But he does have a lot of pain in his mouth when brushing teeth.....but I can't see any ulcers xx

[RainbowPastel]

Hope you get it sorted out. When I was first diagnosed I was going to be toilet over 50 times a day.

[brownelephant]

totally normal
you have a lot on your plate, no wonder your emotions are so rough.

can dh come with you/ds to the gp to press for referral? for some reason males tend to be taken more seriously...

good luck with everything!

[Aridane]

It would be surprising if you weren’t losing the plot! [flowes]

[Aridane]

not [flowes]

[MiniCooperLover]

Has he lost a lot of weight OP? A friends daughter was diagnosed with Coeliac after a GA biopsy after losing 1 stone in a short space of time (she was 6 at the time) and had had negative blood tests etc. Keep pushing, good luck.

[SoCockneyItHurts]

Yes DH comes to all appointments but usually let's me do the talking. But he's as fed up as I am and has told to let him do the talking in future.....he's a lot more assertive than I am xx

[SoCockneyItHurts]

No weight loss which is why they are dismissing IBD or similar. But DS has weighed 3 and a half stone for the past year now.....no loss and no gain....and he's 8 years old. We are a family of hefties lol....all four of us except little DS...neither of our other 2 were anything like him. Poor little thing is currently on his 4th diarrhoea today bless him :(

[Notmyideamovingon]

I think it's absolutely normal to be stressed by this and you are doing well to keep it from ds as much as possible. I am not knowledgeable about ibd but I just wanted to say don't do "York" tests they are a waste of time and money and have zero scientific basis. You should absolutely push for answers as soon as possible but stick to mainstream medicine.

[chandlersfraud]

You poor thing sounds horrible. Can't comment on the ulcer, but

My toddler dd has 'fast transit' or toddler diarrhea. I had thought it was an intolerance or allergy/coelacanth disease. When the consultant diagnosed it he gave us info on how to change her diet so as to slow down the transit (more fat, full fat dairy, not too much fibre or whole grain stuff, less fruit & certain veg, no fruit juice, no tomatoes/veg with skins or husks, not too much sugar, not too much liquid etc).

Literally after a few days her bowel movements were more normal - previously 5-6 loose movements a day and red raw bleeding nappy rash (poo was more acidic because of passing through quickly). Dr also said kids normally grow out of this by 4 or 5 so it sounds unlikely to suddenly start in your ds. Also if you've changed the diet to slow it down with no effect then surely they have to consider that.

[watchingthedetectives]

This definitely sounds like Crohns disease to me - unexplained iron deficiency anaemia (most patients with Crohn's can't tolerate oral iron and he may need an iv infusion) , recurrent perianal abscesses, ongoing diarhhoea and mildly elevated inflammatory markers.
I would probably request Chelsea and Westminster - I don't know if the Evelina has a paediatric gastroenterology department but C and W definitely do, Dr Fell is very nice. Evelina did not previously but there maybe one set up recently and GOSH will only take referrals from other hospitals.
Ask the GP to send a faecal calprotectin level - not 100% reliable but if raised highly suspicious of inflammatory bowel disease. He will need to be scoped and scanned though. It doesn't sound like coeliac to me and i agree with those who say keep away from the York test its expensive and not relevant. He needs a diagnosis from a mainstream specialist. Good luck

[Just2MoreSeasons]

for you op, I'm not surprised at all you're finding this hard, anyone would be.
A child I know has just had a diagnosis of IBD at Bristol hospital - parents were very happy at the support they were given, but are also finding the whole ting very tough.
We found this organisation specifically for children which may be of help to you, maybe you could call them?
www.cicra.org

[SoCockneyItHurts]

Thank you *watching that's very helpful xx

[spiderbabymum]

Totally agree with watching the detectives
Excellent post
OP
This reall sounds like crohns
Get him to a paediatric gastroenterologist asap
Read up about crohns on colitis uk

Focus on getting the correct diagnosis from an expert first

Then you can get treatment started
Xxxxxxx

[SoCockneyItHurts]

Thank you xxx

[AutumnalTed]

My DO has chrons, he’s just read this and said his own mum could have wrote that about him! It’s a simple blood test to diagnose, any questions just PM me

[AutumnalTed]

DP**

[watchingthedetectives]

Also agree with PP re CICRA - very sensible advice on there

[Tedster77]

You poor things . Whatever it is you are going through an awful time and I think it’s totally understandable you feel like you do.

Obviously I have no idea what is wrong but there’s a lot of Chron’s in my family and it’s presented in a very similar fashion x

[watchingthedetectives]

But don't agree re a simple blood test - maybe a false negative ( in 5 -10%) and the amount the tests (CRP and ESR) are raised doesn't necessarily correlate with the disease severity. Plus they can be up in other illnesses.

[thelastredwinegum]

I have UC - tested for coeliac first as gluten free diet relieved but didn't stop symptoms. CRP was raised but it wasn't until I broke down at my GP that I was sent for a colonoscopy when I was diagnosed.

@missconductus I was offered entvyio but there were no guarantees it would work, inflectra/Infliximab stopped after less than a year so I opted for surgery. So pleased it's working for you, I'd well and truly had enough.

[WhentoD]

I just wanted to add that a child that has stopped putting weight on is the same as an adult losing weight. Would be worth tracking his weight and height in the red book children have as a baby as tracking against growth (height and weight) centiles gives useful indication of health. You don't absorb nutrition well with fast transit so become deficient in important vitamins and minerals. Sadly, going private might be your best option to at least get some advice and push the nhs into action.

[user1499786242]

Welling up reading this thread!
I have a son and just the thought of him suffering like this is just too much :( my hearts breaking for you and your son!
I have no advice at all, but wanted to say I really hope you get the help and treatment he needs!
Sending hugs!
Bless him

[LostMyBaubles]

Op please check your PM. I've messaged you

We were in similiar situation and I've messaged you there with names etc

[Didiplanthis]

Definately push for a referral to the evelina and it is NOT 'normal' for children to get peri anal abscesses.