Refusing a ct scan

[worriedmama16]

Long story, I'll try to outline best I can.
My daughter has had numerous episodes of viral wheeze sine she had bronchiolitis at 7 months(she's 4 in April)

It has usually always been viral, hospital have checked her sats, prescribed predisonale and sent her home. She also has clenil twice a day and salbutamol when needed, which is only when she is ill.

In September last year she had atypical pneumonia, only symptoms were fast breathing and a temperature diagnosed by chest X-ray, again at the end of October another chest infection treated by gp with antibiotics, she went from being lethargic and clearly unwell to being back to normal the next day.

Fast forward to now-she had an X-ray mid November with shown changes to her chest , general paediatrics referred her to respiratory, they repeated the X-ray at the end of December and still changes were there so blood has been taken, a 4 week course of antibiotics and a ct scan booked!

I'm not medical but surely after 2 bouts of chest infection they are bound to be scars?

It's still not that long ago and a ct seems to be jumping the gun and I'm concerned about radiation.

She is very well in between episodes, eating, growing and keeping up with all the other children at preschool.
No wheeze or cough.

Also the consultants letter mentioned interstitial pulmonary process, I googled and found some terrifying things.

Anyway, my instincts tell me this is just a childhood bad chest that she'll grow out of( I had similar incidents when I was young)

I don't want her to have this I think it's too much.
Opinions and advice please!!

I’ve no direct experience of this but if I was in your position, I’d take her for the scan. The medics clearly think it’s worthwhile and I’d be surprised if they suggest a CT scan without good reason.

The reason they want to scan is you can't have a decent look at lungs via X-ray alone, also it's a huge children's university hospital , I suspect they like to gather as much information as possible about all children for teaching purposes. Is that possible?? Do they do that?

They wouldn't send her for a scan if they didn't think she needed it. They wouldn't scan just so they could use it for teaching - what's the point in scanning healthy lungs? they could do that anywhere.

I know everyone says you know your child best, but in this case I think you're wrong. Take her for the scan.

I won’t comment on your daughters medical condition over the internet, but I can tell you that all CT scans have to be approved by a radiologist and they will not do that unless they think there’s a good reason that outweighs the radiation risk, especially for children.

Please talk to the respiratory doctors / specialist nurse about your worries, it sounds like you could do with some more information about what they think is going on and why they want to do the scan.

And no, there is no way a child would be given a CT just for teaching purposes!

Medics and radiologists would not approve a scan on a child if there wasn't good indication to do so. They don't scan children just to collect data pretty sure they have enough sick children that genuinely need them.

I've seen consultants have arguments with radiologists over X-rays and scans and the medical need. A radiologist will vet all scan requests.

I'm not saying her lungs are perfect, after two infections they will be scarred but it seems a massive reaction to what seems an obvious outcome?

You've answered your own question - you're not medical. Your daughter has had a lot of lung problems in her short life and the medico wants her to have a ct scan for good reasons . I know you are terrified but refusing to have her scanned isn't going to make this go away. Your instincts are not reliable, and the fact that you had similar incidents as a child, and you grew out of it, doesn't mean that she will. Do let her have the best treatment possible - you don't have the training or knowledge to make a judgement call on her condition.

If she has persistent changes on a chest x ray a CT is the sensible next step - if she has got scarring or some degree of interstitial lung disease it’s important it’s picked up on so it can be managed (for example regular prophylactic antibiotics/early treatment for any infections).
Teaching hospitals carry out hundreds of CT scans a year on children who need them as part of diagnosis/treatment, trying to arrange an urgent scan on an inpatient can be a struggle sometimes as so many children need scans - they have absolutely no need to do scans just for the sake of it (quite apart from the ethical implications of scanning children unnecessarily and delaying needed scans)

worriedmama16 I undesttand your concern. Your daughter is very young but I'm sure they won't be using your daughter just to get research information. These tests are expensive and the NHS isn't exactly overwash with cash.
Why don't you talk to the doctors/consultant. Talk about your concerns ask them why they think she needs the scan what the risks are, what the risk of not having them are and then make an informed choice. Don't Google it though you will find all kinds of unreliable information there.

You were happy for her to have 4 weeks of antibiotics even though it was a month after her referral. Why's that? Because you trust the medics.

Repeated use of antibiotics is more dangerous long term than one CT scan.

Would you not rather have the reassurance that you're right than the worry you might not be?

Absolutely right that a CT gives more insight than an X-ray and they need this to rule out/diagnose any potential problems.
It’s worrying when your child needs procedures such as this. DS had to have a general when he was v little and I was beside myself but it doesn’t mean it’s not worthwhile when there have been health problems.
Talk to your care team, ask questions and put your mind at rest as best you can but I’d suggest the CT is necessary.

Lungs should recover completely after infections. If they are scarred then the doctors, and you, need to know. Also, CT scans can help to distinguish between lots of different types of damage or disease, it’s not a case of scarred vs not scarred.

From what you’re saying you really don’t have enough medical knowledge to make an informed decision about this at the moment - please please talk to your daughter’s medical team to get the information you need.

My DD has a CT following what they thought was recurrent viral wheeze, plus 2 bronchoscopies. Turns out it isn’t a viral wheeze and she now has lot of ongoing medical treatments etc for the foreseeable future. Please do the CT so you know either way

Argyllftm is that adult lungs or just children's? My lungs are scarred from a bout of pleurisy when I was 27.

We have had a similar history to you. We’ve had testing for cystic fibrosis. A ct was mentioned as being further down the line. We had bloods done which showed a non-response one of the immunisations. We’ve since had that and chest problems have disappeared. That said if they are concerned enough to do the ct scan then I would have it done. Doses are carefully calculated, and modern scans deliver lots less radiation. A specialist will approve the request.

Why would you not take her? Why risk her health?

For God’s sake, this is the NHS - they don’t spend any money at all unless they think it is absolutely necessary. Send your daughter for the scan.

Does that fact she so well in between incidents not mean anything? Surely if she was genuinely ill she would be like that all the time?

And I've spoken to her doctor. Won't speculate until they've scanned her.

I would take her for the scan, I can't understand why you wouldn't.

The scan will take minutes, very quick. For back ground I worked in the CT department in my trust. The radiation dose is minimal, and in some cases based on weight.
The radiologist will of looked at the request and based their decision on that. I would have it done. My daughters have epilepsy and have had more scan than I care to mention but it was in their best interest.

If I had a child with a long history of chest problems I’d be asking them to do a ct scan fgs

No it doesn't mean anything. If she gets a bug her chest is obviously more susceptible to infection. Ask for the scan to be done by cf protocol, lowest dose radiation. Usually the children's scans are set to be the lowest possible anyway. Multiple scans done every year I'd be worried about. One over your life time I wouldn't. An X-ray is the equivalent of a short flight.

I wouldn't risk the possibility of missing something like bronchiectasis or a pocket of infection.

Look at it this way, OP, say you didn't go for the scan then later down the line it turns out to be something serious that could've been picked up and sorted now through this scan. Don't have regrets.