To take my son to A&E on Monday

[PuppyKeep]

Deep breaths.

I know I'll get attacked for this, as A&E is for life/death emergencies, but my heart is breaking for my son and I must help him.

He's 13 and autistic. For several months, he has had extreme fatigue, gradually getting worse over time. He is losing weight rapidly and is now clinically underweight. He looks skeletal, sleeps all day and has chronic constipation, despite daily prescribed laxatives. When he finally has a poo, there is a lot of blood. He is in pain (lower stomach and bum) - I worry he's developing fistulas or worse. His mouth is full of ulcers. He has had blood tests which show hugely raised inflammation markers. We are waiting for a stool test. The community paediatrician strongly suspects Crohn's and has put in an urgent referral to the city hospital. The hospital estimate 4 weeks till he can be seen (despite the paediatrician pleading for him to be seen within days as he is so sick). 4 weeks! No treatment.

I phoned the hospital in desperation and asked if I took him to A&E could he get treatment. The nurse said he would not get the specialised treatment he needs over the weekend as the consultant has gone home, but we might be successful on a weekday before 5pm if we try A&E then.

My thinking is: help him through weekend as best as possible and then rush him in on Monday?

I would ring 111 - you can do it while waiting in A&E if you want. My cleaners son had similar and I rang local nhs peds dept who told me to tell her to ring 111 and say she was not happy with local gp and wanted referral to local peds dept.

I took ds to A & E after he was sexually assaulted by one of his dad's carers, he was having nightmares & flashbacks, he was referred to the forensic unit at the Children's hospital the same day where he saw a psychologist who then booked him in for weekly counselling sessions which he had for 6 months along with play therapy & family therapy sessions. I had previously taken him to our GP who referred him to CAMHS but was told he would be waiting at least a year if he was accepted on the list at all. Sometimes you have to do what you have to to get treatment, being compliant & quietly waiting doesn't get your child the help they so desperately need.

I hope you get somewhere tomorrow OP. My DC was investigated for Crohns and it was a long process because we had to wait for a ogd/ colonoscopy under a general anaesthetic and an ultrasound. Hopefully there's a gastro paediatric team at the hospital your going to? If not choose to go to an A&E in a hospital that does have this team which will speed up arranging urgent investigations to confirm diagnosis. You may have to insist he's admitted if it looks like your being fobbed off.

This is just awful. Your poor son, I sincerely hope he will be ok

@PuppyKeep

I just want to wish you luck and hope that you manage to get something done today.
And that your son feels better very soon x

Have they checked him for type 1 diabetes? Losing weight, fatigue can be a sign of diabetes.

Op did you take him today?
How is he?

Go to GP they can get them seen by the right person and admitted to a ward.

How is he doing @PuppyKeep?

What happened OP? @PuppyKeep

Any update op? Hope you got him seen.

I hope you've been able to get some help for him OP x

I hope you’ve taken him in and got some answers now, op.

It does sound like Crohn's and if so, the sooner he is diagnosed the better. Also, if ye are fobbed off, if you go to a&e a second or third time they will have investigate further. Best of luck with this

Crohn's does more usually involve diarrhea though, it can be constipation but much more uncommon.

How is he doing OP?

Oh OP. As others have said take him. Yes you’re right that he might not get the specialist treatment he requires immediately, but they will very likely admit him to provide different forms of nutrition.

You say it isn't good enough and that your child waited too long but also that publicising NHS failures isn't the way to improve it..?

Try not to panic OP! I can see how it’s different and very worrying for a child, but I had all these symptoms and it was getting worse and worse, due to waiting lists and having to have a colonoscopy, it took around 2-3 months after symptoms started to get my diagnosis and treatment. I was all ok, i’m sure your son will be ok. Sending hugs xx

Poor thing :( I assume they've tested for coeliac?

But tbh it is already publicised how much the NHS is failing in some areas yet nothing has changed

Do whatever it takes to get hIm seen.

@PuppyKeep It might be worth you reading this book:

Inflammatory Bowel Disease: The essential guide to controlling Crohn's Disease, Colitis and Other IBDs Paperback – 4 Nov. 2010
by Dr John Hunter (Author)

I read it some time ago and I think it said that an exclusion diet was effective against crohn's. I'm not sure if that is right in your son's case, but the book is very good, and would be useful to get hold of if that is what you are dealing with.

I hope your ds is ok and being treated @PuppyKeep ?

It does sound like Crohn's. Often it doesn't get diagnosed in children until crisis point, via A&E, as symptoms can start off as being quite vague and they get dismissed in primary care. Gastro Depts often have 4 month waits via GP. Absolutely go to A&E, they can do infection and inflammatory markers and get the results the same day and possibly send off a calprotectin. An urgent referral can be made to Gastro for a colonoscopy and scan. Once a diagnosis is confirmed, a treatment plan can be put in place and things can turn around. All the best OP.