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 :(

Poor ds and you. You sound like you have a good plan though.

Sending you and some

Thank you all again.....I really appreciate your support xx DS went back to school today, I took him to GP yesterday (a different one in the practice) and he was concerned about DS's symptoms and suggested Crohns and I told him everything we've been through. He looked into DS's blood results and was shocked at his inflammatory markers which the paediatrian we saw at the hospital said weren't that high. He printed me off other bits he thinks the gastro team will need to see....he said DS may need a camera but I already knew that. He's the first doctor I've seen that shared my concerns. I've managed to get a stool sample for the faecal calprotectin test and I dropped that off this morning. Just waiting for the letter now to book the appt at the Evelina, hopefully that'll come today xx

So pleased to see your update. Really hope you can get Evalina appt v soon. As others have said, make sure after you've made the choose and book appt that you also ring either the appts team or the consultant secretary and say you'd like to be offered any cancellation slots and again explain ongoing symptoms. Urgent appointments are so variable, I really hope the wait isn't too long,and that you can manage to speed it up as much as possible. So frustrating to know your child is ill and just waiting for next step

Great progress.

Thank you for updating SoCockney I can almost hear the hope returning through your posts. Keep holding on, you’re doing great.

I’m so very sorry he’s been let down up to this point though. It shouldn’t have taken this long for you to get the investigations he needs

Brilliant progress. I hope he responds well to treatment.

Hi
To get all of that done since Tuesday is just incredible !!!
Well done
A few thoughts
The FCp could be vital here
I would def avoid going private
Try to hang fire in too much research until the correct diagnosis is established
Get some support for Yourself : keep yourself as Strong as you can be

You are on the right track

Continuity of care is so vital . See the same gp

Keep a brief diary if symptoms

Mumsnet hugs

No idea about the bowel problems but if he’s getting abscesses, asl them to test for MSSA-PVL (metacillin sensative staphloccus aureus- Pantone Valentin Leucocidin). It can be acquired in the community or hospital and if he has it, every time he gets an anal fissure due to his toileting problems, he will risk getting another abscess.

Thank you xx Well I rang the Evelina appts line and we're in the system so to speak. Apparently the consultant will read the referral and decide how soon he should be seen. However, my poor poor DS has developed pain in his bottom yet again, since yesterday which is getting worse although I can't yet see anything he can't sit down today, and the pain is in a different site to the first 2 abscesses. I'm so worried. This is how his first really bad one started. I'm scared....it's making me wonder what on earth is going on under his skin and scared that nobody has checked him out properly with a scan or something just to see what's happening. I have a script for antibiotics but he just can't take it as he just brings it back up as it's so disgusting. And I truly don't believe the antibiotics do anything anyway. And it's a Sunday. I just don't know what to do I could be panicking and it could be nothing but history tells me different. It's becoming a nightmare

If he can’t sit down and is in so much pain then take him to A&E.
Don’t second guess yourself, just pack a bag, a soft pillow for your son to sit on, electronics for the boredom and go.
Good luck, you’ll get there, don’t lose heart.

Please take him to the emergency department, especially if he can’t keep the AB down. I’m crossing everything for you.

Take him to a&e with any information you have and explain the history and referral.

At the very least they can sort him out with some medication to ease his symptoms.

It does indeed sound like a nightmare but you can do this. Your his mum and you've got his back

Thank you x He's not in too much pain at the minute but it'll get worse as the days go on. I've not gone to A&E yet as there's no trains from my station due to engineering works and I want to see how he is in the morning. If he is the same or worse then I will 100% be getting the train up to London and will refuse to leave until someone can tell me what the hell is going on. I still can't see anything, no redness lumps or swelling but he is a little hot. I'm going to make sure we're all organised for tomorrow, I've done all the washing etc for my elder two, my DD starts a new job tomorrow. I'll have to let my manager know tonight what's happening so they can arrange cover etc. I'm hoping he'll make a miraculous recovery overnight but not hopeful xx

Oh bless him.

Can he sit in a warm bath, maybe that will soothe it a little?

So sorry you’re all going through this. Hope you get some answers ASAP.

OK so he had a bath and there was some pus like blob in the bath and his pain went away. I had a good look afterwards and there is a 3rd spot now which is discharging but only slightly. He had a poo and the spot started to bleed which freaked him out a bit but it wasn't lots. So now I'm not sure what to do next. He's pain free for now and can sit again bit obviously we'll see how he is in the morning. I feel so drained... it's such an emotional rollercoaster!!

No advice but thinking of you both. Is he on.pain meds to help.so he's not as anxious doing a poo?

Your poor boy, glad he has had some relief.

I would ring the secretary tomorrow and explain what has happened again today and beg/plead for an earlier appointment. Secretaries are amazing people to have on your side.
Good luck x

Just read from the beginning. So sorry your DS is suffering like this. I hope he gets a diagnosis and proper treatment very soon.

If it does turn out to be Crohn' or UC, feel cheered by the fact that treatments have improved enormously in recent years.

I have Crohn's and when it's flaring I need to stop eating and just have drinks. No dairy products for me, so I drink tea and dairy-free milk. Alpro do a lovely chocolate soya milkshake (currently on offer at Tesco). It helps to keep my energy up.

As I recover from flare ups I find these foods are my friends: soup without bits, white rice, potatoes, poached salmon/ cod, canned tuna, steamed carrots, non-dairy yoghurt (made from soya, coconut milk etc.), bananas, stewed apple.

Don't worry about time missed from school. He will easily catch up when he's feeling better.

I would second ringing the secretary. Also wanted to say how sorry I am your ds is going through this.

Fwiw, my dd (just 9 years old this week) is having ongoing investigations for IBD, having been ill since last August. She doesn’t have anywhere near the red flags your ds does, but had an endoscopy and colonoscopy soon after seeing the gastroenterologist. I had to really fight to get her seen, as she kept being bumped to general paeds, but it was calling the gastro secretary direct that was the turning point and from then we were seen in under two weeks. I took a photo of a particularly nasty grey stool with a large amount of dark red blood mixed in and after seeing that she decided there and then to order a scope, which took place two weeks later.

Her blood and scope results have come back negative (other than the fact she is anaemic) for any obvious signs of IBD, as far as I can tell, but we have received a report to say the Gastro still suspects she has one.

Things stalled after her scope and we waited for two months for follow up, with zero improvement in her symptoms - if anything she is worse. Again, called the gastro secretaries and she had an appointment booked within the week. We are back for that appointment this week for them to explain the results and what their plan is going forward.

It is horrible to see them so poorly and in pain and not be able to do anything yourself or get anyone to listen. I really hope he gets the help he needs really soon.

Good luck.

If there is an open wound he really must get it seen to ensure no infection. Could you call GP and ask for telephone appointment for advice- or- better- get the number of the IBD nurse at your hospital. These are the angels that get stuff done. Call and leave a message and I’m sure they’ll give you good advice.

So we're now in St Thomas' Hospital

Posted too soon....DS is in hospital at St Thomas'. He had a really high fever and fast heart rate so GP sent us here this morning. They want to keep him him as his heart rate won't go down. They say his body is fighting an infection somewhere but they can't pinpoint it. He's had a chest xray and a swab for flu as they'll need to treat him if it's that as his body wouldn't be able to fight it. They have spoken to the Gastro team here who want to See us tomorrow so that's good. His faecal calprotectin test came back high at 400!!, the GP rang me this morning to tell me. So all a bit of a nightmare but hopefully now we'll finally get answers as to what's going on xx

Posted too soon....DS is in hospital at St Thomas'. He had a really high fever and fast heart rate so GP sent us here this morning. They want to keep him him as his heart rate won't go down. They say his body is fighting an infection somewhere but they can't pinpoint it. He's had a chest xray and a swab for flu as they'll need to treat him if it's that as his body wouldn't be able to fight it. They have spoken to the Gastro team here who want to See us tomorrow so that's good. His faecal calprotectin test came back high at 400!!, the GP rang me this morning to tell me. So all a bit of a nightmare but hopefully now we'll finally get answers as to what's going on xx

So sorry that he’s been really unwell and you are in hospital

Hoping that this will now get to the root of the problems and proper advice on what to do next

I am so sorry to hear how poorly your ds is. He’s in the right place now though and hopefully they will finally take action and give him the help he needs.