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 :(

for you both

I’m so sorry he’s so unwell. Hope you’re coping with it all.
Glad you’re seeing the gastro team - don’t be fobbed off with a registrar though, make sure you see a consultant. Write everything down so you don’t forget what’s been said
With that calprotectin result I’d really hope they’ll take things a bit more seriously.

Very best wishes to DS and you. Good luck

Oh and if They don’t have paediatric gastroenterology, then I’d ask to transfer. You don’t need either an adult gastro nor a general paed.
Hope they’re going to ultrasound his bum and tummy to look for collections of pus.

Glad he is in the right place, OP

Sending to you and ds. Glad he's in the best place to finally get answers.

Sorry to hear your update op thinking of you both. At least you’re are in the right place now for some help.

Hope that you finally get some answers and that your son picks up really quickly.

No advice to offer but I just wanted to say I hope you now get the help your poor boy needs. This must be so awful for him (and you) and it seems you’ve had to fight far too hard to be heard. I hope your next update is a positive one

no advice, just wishing you all the best.
speedy recovery for your lovely ds and hopefully a diagnosis and treatment soon!

Thank you xx we're going to try and sleep now so I'll let you know how we get on tomorrow xx

Thank you xx we're going to try and sleep now so I'll let you know how we get on tomorrow xx

How did your night go? Hope your son is feeling a bit better and your day brings some answers

Please make sure they check him for sepsis which can be caused by a chronic low grade infection, particularly when there's an untreated underlying health condition. Poor thing. Hope he gets well soon.

Well we can go home today, his temp is down as is his heart rate. The gastro consultant was amazing! He is going to have DS urgently investigated with an MRI scan, Endoscopy and Colonoscopy. He said it's highly probable it's Crohns disease given his history. He has to take 2 lots of antibiotics 3 times a day for 2 weeks to control and contain any abscess activity that could be going on under the skin where we can't see. And then some strong meds that we have to give him 24 hours before the camera tests to completely clear him out. I've been given the bleep number of the consultant so I have direct contact if we need it and I feel so much better that we're finally getting listened to and getting something done so coming here definitely paid off. Hell of a lot of info to process but I'll get my head around it all. MRI should be next week and cameras on or around couple of weeks. Need to go to a pre op assessment and pick up all his meds before we leave here then we'll be going home! ☺ XxX

Well we can go home today, his temp is down as is his heart rate. The gastro consultant was amazing! He is going to have DS urgently investigated with an MRI scan, Endoscopy and Colonoscopy. He said it's highly probable it's Crohns disease given his history. He has to take 2 lots of antibiotics 3 times a day for 2 weeks to control and contain any abscess activity that could be going on under the skin where we can't see. And then some strong meds that we have to give him 24 hours before the camera tests to completely clear him out. I've been given the bleep number of the consultant so I have direct contact if we need it and I feel so much better that we're finally getting listened to and getting something done so coming here definitely paid off. Hell of a lot of info to process but I'll get my head around it all. MRI should be next week and cameras on or around couple of weeks. Need to go to a pre op assessment and pick up all his meds before we leave here then we'll be going home! ☺ XxX

Seems like you're finally getting somewhere. Glad to hear your DS is feeling better.

Glad you are finally been taken seriously. I feel so sad for your DS .
These are for you.

Oh that’s great news, finally some positive action! Hope the ABs work to contain the abscesses and he is feeling better soon. Poor little thing, he’s been through so much and not at the end of it yet

So pleased to hear you finally have a decent consutant in your corner and your ds is getting a thorough investigation. It’s so wrong, but so often all it takes is one decent dr who actually listens, unfortunately there seems to be far too many that don’t.

I'm really pleased you have a consultant getting things moving. You must feel like you can put your energy into your son rather than fighting the NHS.

Not to be a downer but just two things - don't be afraid to harasses the hospital for appointment dates. They're so overloaded you have to sometimes create a little noise so you don't get lost. Secondly don't be disheartened if nothing conclusive is found on this round of tests. Bowel disease is elusive and can be hard to pin point. Explain your fears to the consultant and it's likely they'll be as keen as you to keep up the hunt if they have to

Really good you’re finally being taken seriously!

So please for you that your DS is finally getting some help. I hope you’re home and have a good nights sleep.

When the dust has all settled, and you’re DS has a diagnosis and treatment in place, please consider a letter to PALS at the first Trust where you were dismissed. The story you presented to us here should have meant further investigation and they need to look at their processes. A non-blame letter asking for this will make any doctor with a conscience stop and think about how they approach cases in the future.

I really hope things get sorted quickly for your DS.

I’m really pleased he finally being treated, but sad for you all that it took so long.

Really pleased they're taking you seriously. Hope you get to the bottom of this soon.