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Misdiagnosis- left reeling.

39 replies

PinkyU · 12/11/2019 12:08

2 months ago via a telephone consultation a nurse practitioner diagnosed my 6 year old as having fecal impaction, we were to begin a de-impaction regime, consisting of giving huge daily doses of laxatives.

2 weeks in and lo is in agony, can’t move for pain, we immediately go to A&E where they X-ray and come back to confirm impaction, say the pain is because she is “significantly impacted throughout her intestines”. She is given a 500ml enema, held down, screaming in pain. She is autistic, has no understanding of what is happening to her.

We are sent home with even more laxatives.

For the next 2 weeks lo is writhing in agony, we fight daily to administer vast amounts of medication into her. We have multiple phone calls with the nurse who tells us to continue as lo is so impacted.

The pain gets so bad lo is shaking and vomiting. We attend A&E again. We’re told it’s because she’s so impacted, we need to increase her laxatives. We do.

Lo has been off school for 2 months. Can’t even get off the sofa such is her pain, she has lost 10lbs, doesn’t have the energy to sit up.

We finally get an emergency appointment with a gastric consultant, he reviews the X-ray from 5 weeks previous. He looks at us agog and begins apologising. He says the X-ray was normal. Lo wasn’t impacted, she never was. The X-ray was misinterpreted.

2 months of agony, fear, trauma. My autistic 6 year old weighs less now than she did 18 months ago. Her intestines are swollen and will need weeks to recover, if they do. She needs urgent kidney scans to check that her kidneys haven’t been permanently damaged. She is still in constant pain.

She is broken, I am broken, my family and relationship with DH has been irreversibly damaged due to the sheer stress and trauma of the last 2 months.

I just needed to get that out.

OP posts:
Allthebubbles · 12/11/2019 12:11

I just wanted to say how sorry I am that this happened to you and your child. I work with children with ASC and I know how hard and horrible this will have been for you and the trust issues you will be left with. Wishing you all the luck in getting her weight back up and recovering.

aggitatedstate · 12/11/2019 12:13

Jesus I am so sorry you've been through this

Rant away, I hope it gets sorted Thanks

HollyBollyBooBoo · 12/11/2019 12:13

Gosh that's awful. Have they identified what the original problem was now?

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PinkyU · 12/11/2019 12:13

Thank you bubbles. Lo unfortunately is refusing to eat as food=pain, we are now looking at an ng tube being placed. I can’t believe that this is happening.

OP posts:
GlamGiraffe · 12/11/2019 12:15

Its shocking. Terrible for all of you.
Were you seeing the same staff each time?
An investigation needs to he made as to how thus has happened.
Urgently chase PALS.
Gets some psychological support for yourself and OH. get hospital to arrange urgent psychological help specialist services for ASD children following trauma. They need to go all out at this point.

PinkyU · 12/11/2019 12:16

Lo has been under gastro for years but due to not passing formed stools, she is due to undergo biopsy and other tests for short segment hirshprungs and/or other reasons for her issues.

According to the consultant she should never have been on anything more than 2 sachets of laxatives a day, she was on 10, plus another laxative.

OP posts:
Raphael34 · 12/11/2019 12:17

That’s absolutely shocking op. They had so many chances to realise their error!!

HairyFloppins · 12/11/2019 12:19

Bloody hell that's dreadful OP.

Your poor daughter.

PinkyU · 12/11/2019 12:20

We had a call today from the play therapist at the hospital to go in next week, I’ve no idea how lo will react to that, she’s so anxious I can barely get us out of the front door.

It’s all sinking in now and I’m utterly devastated for her, that I gave her all of that stuff that has made her so ill, how will she trust me again, how will I trust the doctors, how can I forgive myself for doing that to her?

OP posts:
MadnessInMethod · 12/11/2019 12:21

That's not just a misdiagnosis, it's a catalogue of errors.

Obviously your priority is to get your daughter well again now, but then I'd be wanting full on investigation into the whole thing.

GrumpyHoonMain · 12/11/2019 12:21

Contact PALS at the hospital

PinkyU · 12/11/2019 12:22

We had weekly telephone consultations with the nurse, I repeatedly expressed concerns about lo’s pain and that the medicine wasn’t working, she told us we had to persevere, it will work eventually.

OP posts:
CanISpeakToYourManager · 12/11/2019 12:24

You could speak to a lawyer. That is awful. I really feel for you all, absolutely dreadful.

PinkyU · 12/11/2019 12:30

We are going to start the complaints process today. The consultant and nurse have both already accepted responsibility and have apologised but I feel we need to complain to prevent this happening again.

From the small amount of reading I’ve done on laxative misuse/overdose it seems that it can cause lifelong organ damage and can be fatal. I’m hoping it was caught before any long term damage has been caused.

OP posts:
Woollycardi · 12/11/2019 12:32

Oh my goodness, that is absolutely horrific. Vent away here. Get it out.

HeyNotInMyName · 12/11/2019 12:33

@PinkyU, this is awful. I can relate to how you feel because I have been in a similar situation, albeit nowhere near as severe. It is devastating when you fight for your child, you know here is something wrong but everyone is dismissing you concerns all to then see that you were right all along.

My first reaction is to say, take it easy for the ext few weeks. But if you still don’t feel you can trust any HCP and that it is your fault if your dd is unwell now, then I would recommend you see a counsellor.
I wish I had done that for myself at the time.

Househunt1 · 12/11/2019 12:38

Omg! How distressing for your child! Hope you get this sorted

KurriKurri · 12/11/2019 12:39

I'm so sorry this has happened to you and your poor little girl. Definitely complain, and also make sure the hospitla has everything in place for getting your child well again - physically and psychologically ,t ehy should be bending over backwards to put right the damage they have done. Don;t agree to any kind of discharge from care until you are totally satisfied your child is OK.

I would also as other have said get a lawyer who specializes in medical incompetance. I had a misdiagnosis last year that caused lot of trouble for me, and I found PALS completely useless and very much on the side of the hospital rather than being impartial. I may have been unlucky in who I spoke to, but just be prepared to go to an alternative if PALS are no help.

Your poor wee girl - I can't begin to imagine the distress for her and you as a family of this mistake. Flowers

Staffy1 · 12/11/2019 12:41

Oh, I'm so sorry about this. We are about to see a paediatric gastro on Thursday for my DC, also autistic, for faecal impaction that no laxatives so far seem to have worked for. This makes me wonder if its really the case! Will be sure to get him to look at the scans properly. Wishing your DC a full recovery, this is really awful.

PinkyU · 12/11/2019 12:55

I think now I’ve actually written it down it’s really hitting me, I’m shaking and just feel like breaking down, but I’ve got my lo here and her wellbeing is far more important than anything I’m feeling.

It’s the fact that she doesn’t even understand what has happened and I can’t explain to her or apologise for what she’s gone through and still suffering through, I’m so devastated for her and just feel that I’ve let her down by not challenging or fighting hard enough, she wouldn’t have had to suffer if I had.

OP posts:
Mummyoflittledragon · 12/11/2019 13:00

Omg I’m so sorry Flowers. 10 sachets is outrageous! I’m assuming this is movicol junior or similar. We are all here for you. Big hugs.

Mummyoflittledragon · 12/11/2019 13:01

Sorry I meant to add. You have not let your dd down. You queried this as every turn. Your dd has been failed.

KanelbulleKing · 12/11/2019 13:02

You've not let her down. You did the best you could with the information you had available to you. That's all any of us can do.

PinkyU · 12/11/2019 13:10

Yes movicol paediatric plus senna, with sodium picosulphate in the first weeks of treatment as well. Hundreds of sachets, hundreds of mls of senna, hundreds of mls of paracetamol, hundreds of mls of ibuprofen.

All into her increasingly frail body, she is skin and bone now, today I’ve managed to get 2 spoons of custard and a cheese square into her, which has taken since 6:30 this morning as she’s still in pain and scared to eat.

I’m not sure how we’ll fix things for her now.

OP posts:
ReadingwithTea · 12/11/2019 13:10

You have fought for your daughter to get her help, and through your determination you have finally received the correct diagnosis. Try to remember that. The treatment you were giving her was because you were told it would help her. Try not to be too hard on yourself here, as you have only ever been trying to help your child.

What has happened here, through no fault of your own, is shocking. I really feel for you, your daughter and your family. I hope your daughter now receives every she needs to make a full recovery.