Withdraw consent for child hospital investigation?

[Jumpup5]

Posting for traffic though I suppose it is also an aibu.

A few months ago dd3 had a urine infection. Symptoms started at 5pm and by 9pm she was being seen at ooh service.

They did a urine test and sent us to local a&e because it flagged pretty much everything including sugars.

Blood sugar was elevated too when we got there, they opted to keep us in to do a fasting blood sugar reading in the morning. All normal and advised just due to infection- then sent home with some antibiotics incase the urine sample came back with an infection.

So the day after we got home I hadn't heard anything re the sample. I rang the gp to ask how I'd be informed and they said they'd check and it was positive so gp then called. The gp was lovely and very thorough and said she'd need to be referred for an ultrasound and a dmsa scan. The a&e doctor rang me later that night with the results and I told her what I'd discussed with the gp, she said she was surprised as the normal course of action would be to treat the infection and then retest the urine as it was her first infection. Then no further investigation unless it happened again

She's had the ultrasound and all normal. She has the dmsa scan next week and I've just looked at what actually happens. Dd becomes hysterical in some situations, medical environments being one.

For context it took 8 hours for two doctors in a&e to be able to feel her tummy because she tenses and writhes around. They had to wait until she was in a deep sleep. Any gp appointment is the same, she has constipation and again getting a feel of her stomach means manhandling her. The ultrasound was only completed because I was able to physically hold her against me like a forced hug while they scanned her back.

I've just watched a video and the scan involves the child lying still, the video had the child's legs strapped to the bed. There is just no way she will cooperate with that and I don't want to traumatise her further. She really is terrified.

Equally I'm concerned at going against medical advice. I don't want to look like a safeguarding risk for my child but my gut feeling is to not let this go ahead.

Does anyone know what happens if I cancel? I'm quite worried about either option now.

DD recently had a DMSA scan and certainly wasn't strapped down, she was sitting up too. They had a sort of modified highchair/carseat that could be raised up to the right position but with a harness to top her falling out. There was a playworker there who started a game of "wiggle wiggle freeze" so the lots of wiggling then freeze (scan starts) then wiggle wiggle (break in the scan) then freeze (second set of images starts) over and over until they were done and then she got to pick a prize from the box and got a teddy. For injecting the dye before the scan they used lots of numbing cream and there was a playworker then too who distracted her with bubbles and Frozen songs, she sat on my knee with her arm around my back and while the playworker was occupying her in the front the nurse was doing the injection in the back, it was very quick and she barely noticed.

Why don't you ring the hospital today to discuss your concerns? They'll be to give you more information to help you make whichever decision you believe to be best for your DD.

I think I will give them a call.

It's a relief that your dd wasn't strapped down, the video I watched on YouTube was an nhs one so presumed that was standard practice. I know dd wouldn't engage in any games though, she would be screaming and thrashing the entire time.

It is highly unusual to trigger this referral pathway after just one UTI. Especially if she has chronic constipation as this is likely the cause of the UTI (assuming she has issues with overflow). I wouldn't force my DD to have this scan if she really didn't want to. My two DC have each had a UTI and neither had had scans - despite me having a structural kidney abnormality myself that caused UTIs in childhood. GP said it wasn't yet indicated and right enough they haven't had anymore.

DS has had a DSMA at 6 months old and he wasn't strapped down. I was worried about keeping him still cos obviously he can't cooperate at all and I spoke to them about it. They said it's assumed that babies and young children won't play ball and they're used to it! The magic cream was amazing. He didn't even notice the cannula and he is a nightmare to cannulate, even for a baby.

You need to go back to GP and discuss their rationale for the further investigation. Just because a doctor said they recommend it it doesn't mean you should do it. They sometimes recommend things that seems right for a certain condition and don't take into account the overall well being of the child. I wouldn't blindly follow the advice without good understanding of their reasoning

The rationale for referral can depend on what was picked up by the urine test. DD was referred after one infection as the bacteria that caused the infection was unusual, most UTIs are caused by one type of bacteria (e.coli I think it is) and hers was caused by a different one that is usually only found much higher up the urinary tract so it raised concerns that she could have a structural/anatomical issue or reflux.

You give consent based on having all the information- that’s why it’s called informed consent so go back ask all the questions you need and then ask some more or find someone who can answer them. Many Children’s hospitals have clips of various procedures to help kids/parents learn about what they will be experiencing and see the environment prior to a procedure you could check if there is any for your child’s scan. They did them at my hospital and didn’t strap anyone down but I’ve never seen one to help you. Glasgow children hospital do have videos I used the ultrasound scan one for my son a while back so you could look to see if they have your particular procedure.

DS has had 4 DSMA scans and has never been strapped down.

As pp said they use numbing cream or freeze spray to put in the cannula for the dye, you wait for a few hours for the dye to work. Then your DD will just lie still on a bed. In DS case they have a TV and he watches a cartoon and I sit beside him and hold his hand.

Sometimes you need to wait another hour or two and get more images.

You are not allowed in if you are pregnant though so keep that in mind and send someone else with her if you are.

It's really not that bad/scary a procedure and I assume it wouldn't have been ordered unless needed due to it involving radiation.

Check with your GP for the type of infection it was like a pp said. If it wasn't an e.coli infection it will need further testing

The hospital will have done this procedure for many, many children who have similar anxieties and behaviours to your DD, and many who are much more extreme, so I would definitely have a chat with them (and maybe also your GP) first and they should be able to reassure you.

I'm going to be blunt.

What could happen if you refuse consent for this scan?

They could miss something that is incredibly serious and ends up with your daughter needing life saving, far more traumatic intervention at a later date.

What happens if you do go for the scan?

They can see if there's something potentially serious. She'll possibly be upset, but might not be. Either way, they'll know whether it was just a simple UTI or something far, far worse going on.

Constipation can be caused by connective tissue diseases. And CTDs often affect other parts of the body, such as the kidneys. And they can kill. Autoimmune Diseases can affect the bowel, kidneys and other systems. And they can kill. Cancers can affect bowels and kidneys and other parts. And can kill.

It's not nice, but sometimes you have to do things that children won't like for their own safety/health. She's not old enough to consent or refuse treatment - and they aren't doing this for fun, they're doing it because it's medically indicated.

So take her.

I’d take her and, if they can’t do it, they will document it. It’s better than you not taking her and starting off a potential safeguarding situation.

The gp is ringing back this afternoon. I'll definitely ask about the type of bacteria, that may well be what triggered it but I haven't been told so.

I obviously don't want to cause her any harm and I'm weighing up the positives and negatives of the procedure. It's not a case of avoiding upsetting her, we've been umpteen times to the doctor for jabs and routine checks - each time is the same extreme reaction and I deal with it. I'm more concerned they'll administer the injection and then she'll not cooperate at all for the images. So that would mean radiation exposure for no gain.

I'm pleased more of you have said they weren't strapped to the table. Do they leave the cannula in their hands?

You would absolutely be unreasonable to cancel the procedure because you watched 1 video and therefore know best instead of discussing your concerns/finding any alternatives with the doctors. JFC.

You could go and if you're not happy with the set up refuse your consent if it's gets distressing?

I haven't said I'm cancelling, I know my child, I know how she'll react and how she'll behave.

I was advised by the a and e doctor it wasn't necessary, the gp said it was standard hence my posting. I don't know anyone else who has had this after one uti.

If I had waited for the a&e doctor to call back she would never have been referred in the first place.

At the time I was grateful for the extra checks but now I'm doubting it

The majority of Drs in A&E are very junior /newly qualified whereas GPs are generally consultant level clinicians with decades of experience. There are of course senior drs in A&E (before anyone shouts at me). I'd be inclined to trust the GP a bit more on this one

So after speaking to a gp, they couldn't say why the referral was done but did say that they would advise having it done anyway and that if she doesn't comply or becomes too distressed then it can be cancelled.

I'll be following the medical advice and taking her, thank you to those who commented without making me feel like a terrible parent for trying to weight up the benefits and risks of a procedure.

@NeverDropYourMooncup

I'm going to be blunt.

What could happen if you refuse consent for this scan?

They could miss something that is incredibly serious and ends up with your daughter needing life saving, far more traumatic intervention at a later date.

What happens if you do go for the scan?

They can see if there's something potentially serious. She'll possibly be upset, but might not be. Either way, they'll know whether it was just a simple UTI or something far, far worse going on.

Constipation can be caused by connective tissue diseases. And CTDs often affect other parts of the body, such as the kidneys. And they can kill. Autoimmune Diseases can affect the bowel, kidneys and other systems. And they can kill. Cancers can affect bowels and kidneys and other parts. And can kill.

It's not nice, but sometimes you have to do things that children won't like for their own safety/health. She's not old enough to consent or refuse treatment - and they aren't doing this for fun, they're doing it because it's medically indicated.

So take her.

Complete alarmist overkill at this stage. Ignore, OP! Chat to your nice GP.

They don't leave the cannula in, little ones are likely to fiddle with it or accidentally pull it so it's easier to take it straight out once the dye is injected.

Give the scan clinic a call, their number should be on the appointment letter, and explain to them that your DD is anxious in medical settings and very likely to become upset on the day. It gives then the heads up so that they can manage the situation appropriately on the day, for one of my DD's appointments this was an additional playworker in the room so that they were twice as distracting. The hospital will have dealt with nervous patients before and it'll be nothing new to them but they should/will have strategies to try and make it as gentle, quick, and calm as possible for your DD.

I have been in the position of having to hold my child for distressing procedures. It was 8 years ago I still feel guilty now, he was a baby and has no memory of it. I know in my head it had to be done it meant he has excellent health now. All of your instincts will be to grab your distressed child and run with them. It will upset you that is normal - but you have to apply rational thought to the situation.

If there is a medical issue it needs identification so it can be sorted asap. The staff will be well used to dealing with resistant children trust them (under your supervision). Hopefully the hospital will have access to a play therapists, social stories etc. I hope all goes well.

My DD has a couple investigative things done (not the same as yours). The paediatric team were very keen to balance the risk of missing something with the possible emotional upset / trauma to a young child. They’re very aware of children being frightened of medical procedures and the longer-term issues from that.

I’d been a little dismissive of that aspect, but DD was slightly horrified by it all - the hcp were all great and made it go smoothly for her. A treat on the way home and cake after dinner and grandparents/etc talking to her about it and telling her how amazing it was really helped the aftermath.