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

(367 Posts)
SoCockneyItHurts Sat 06-Jan-18 17:01:45

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 sad

Cornettoninja Sat 06-Jan-18 17:06:06

Are you being seen at a children's hospital? I'd be asking your GP for an urgent referral to the nearest one tbh.

Your poor ds sad. I know ibd's can take forever to get diagnosed and he must be so uncomfortable - putting it mildly I know.

mrsreynolds Sat 06-Jan-18 17:08:55

Oh the poor boy sad
Ok...e mail the CEO of the trust and cc in PALS
Also contact your gp - you can ask for referral to another trust
If you have any spare cash at all maybe look into a private referral for more tests- yes you shouldnt have to pay but sadly the way the nhs is going it will be the norm soon sad

Randomlywondering Sat 06-Jan-18 17:11:53

My husband had similar symptoms as a teenager. He had loads of tests but nothing was diagnosed. His mum started to cut things out of his diet and it turned out that not eating wheat made him an awful.lot better. He does have celiac disease but the wheat was making him very poorly. He said at the time he really thought he must be dying.

beyondreasoning Sat 06-Jan-18 17:15:33

My DH had exactly the same as you're are describing, but at an age younger than your son. He was very very ill before they took it seriously, even with family history of colitis. My MIL went through so many battles with the hospital to finally get a diagnosis of Crohn's disease. My DH is on medication and has had a few surgeries, but still has occasional issues. Keep fighting for your boy OP. I've heard it's very difficult to get a diagnosis for bowel problems for a child especially. Keep journals of what he's eating, when he has a bowel movement and if/when you notice other issues such as the anal abscesses and ulcers in his mouth. Best of luck thanks

Msqueen33 Sat 06-Jan-18 17:16:13

Anemia is normally linked to coeliac. Did he have a biopsy or just bloods done? As bloods can be negative and it also depends how much gluten he’s actually eating. Have you tried logging his diet to see if there’s any triggers in it? I’d swiftly complain and ask for another referral back to gastro at possibly another hospital. Your poor sonz

VivaLeBeaver Sat 06-Jan-18 17:18:02

Can you put him on a gluten free diet and see if it improves? You need to be mega strict re reading ingredients, sauces, etc often have gluten in.

Cornettoninja Sat 06-Jan-18 17:19:18

Can I just point out that if he needs tests for coeliac he needs to be eating gluten. If you do cut it out then make any doctor you see aware of that fact, they'll support you reintroducing it for the purposes of a definite diagnosis.

VivaLeBeaver Sat 06-Jan-18 17:19:40

If you go to another hospital though for further testing/biopsy I believe he will need to be eating gluten in the run up to the test. But I’d try that first....if it works you know the diagnosis without an official test. If it doesn’t work then ask to be referred elsewhere.

VivaLeBeaver Sat 06-Jan-18 17:20:16

X post!

mrsreynolds Sat 06-Jan-18 17:22:19

Also...an e mail to your MP won't hurt either!

SoCockneyItHurts Sat 06-Jan-18 17:23:53

They did a blood test for coeliac and said it wasn't that

BarryTheKestrel Sat 06-Jan-18 17:25:54

Reading your post the first thing I thought was coeliac disease. I'd ask for tests on this.
I'd be at the end of my tether too. Your poor DS. I hope they figure it out and stop fobbing you off soon.

LakieLady Sat 06-Jan-18 17:27:11

I'd be asking the GP for a referral for a private consultation with a gut specialist, ideally one who specialises in paediatric gut/bowel problems, even if it meant that the whole family had to live on economy beans on economy toast for the next 6 weeks.

SoCockneyItHurts Sat 06-Jan-18 17:27:57

I've tried all sorts of things, cutting out wheat, dairy, lactose....nothing made a difference.

Viviennemary Sat 06-Jan-18 17:29:08

That's dreadful. I've never heard of a child getting an anal abscess. Can you afford a private consultation. That's what I'd do if I could afford it. You shouldn't have to but sometimes needs must. Agree with e-mail to MP.

Idontdowindows Sat 06-Jan-18 17:31:35

@SoCockneyItHurts the blood test is NOT definitive! It does have false negatives. I know the amount of false negatives is considered low, but they do happen.

He needs a biopsy.

JustVent Sat 06-Jan-18 17:34:12

Is blood tests the only way to diagnose Chrons?

My friends son had cameras inside when they diagnosed him.

SoCockneyItHurts Sat 06-Jan-18 17:34:31

We have considered going private but now he may have another abscess I'm hoping they'll definitely do more thorough testing

missyB1 Sat 06-Jan-18 17:35:19

Who has he been seeing at the hospital? He needs to see a paediatric Gastroenterologist.

ladylunchalot Sat 06-Jan-18 17:35:56

Blood tests rarely give a positive result for coeliac, bowel scope (think it's an endoscopy) is the best way of diagnosing it. Would your to be able to refer him for that?

ladylunchalot Sat 06-Jan-18 17:37:10

Sorry, bloody predictive text, meant G.P.

Mishappening Sat 06-Jan-18 17:37:50

I am sorry that you are having this battle - poor boy.

MissConductUS Sat 06-Jan-18 17:39:04

You can't diagnose inflammatory bowel disease with a blood test, it has to be evaluated endoscopically. They probably just checked his CRP (c-reactive protein) levels, which is a marker for many types of inflammation. Even then, a low DRP doesn't rule out IBD.

See if you can get him to see a pediatric gastroenterologist. I have IBD (ulcerative colitis) so I understand what you're going through. Your poor little guy!

MrsEricBana Sat 06-Jan-18 17:39:10

Oh your poor little boy. I agree you need to ask to see a paediatric gastroenterologist. Round here kids are better off in the NHS and the main private hospital here doesn't see children.

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