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!!

*sorry I meant limited and diminishing NHS resources, not doctors!

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.
This would be completely unethical and do you really think a large children's hospital are using random children as guinea pigs? I hope it's nothing serious, but the doctors clearly feel the CT scan is justified which may just be to rule out anything serious 🤞I think I would definitely feel the same trepidation as you are, but you (and your mum) seem to have a major distrust of the medical profession - has something happened in the past to make you feel that way?

Why do you think his secretary is lying to you?

I'm also wondering if your family has suffered some trauma to make you so distrustful of healthcare professionals.

No, we absolutely don't distrust them just think they're rushing ahead with an unnecessary procedure because they can.
Or is there something they aren't saying?
Comments regarding the nhs and their spending aren't really my experience, we are very lucky, we've a fantastic gp and my experience within this hospital has always been brilliant, always seen promptly

Are secretaries allowed to disclose such information??

I'm not distrustful I just don't know how the medical community work! How much info they give

My DD had to have a CT at 4 weeks old for a lung issue. That was scary, but it was absolutely necessary.

They didn't need to re scan after treatment

No, we absolutely don't distrust them just think they're rushing ahead with an unnecessary procedure because they can

They're not. You've been told many times on this thread that isnt the case. CT needs to be signed off and it wouldn't be used unless necessary.

I don't think you want to hear what everyone is telling you - they absolutely don't rush in to cts on children, don't do investigations they don't think are required from both an ethical and a financial point of view they wouldn't do that.

If the consultant had brought it forward, then yes, they think there is a need for it sooner, not just may as well do it now.

I know you are scared, but if there is something wrong you can't just ignore it and hope it goes away.

I agree with a pp, to not allow your child to have the scan would be negligent.

I would have the scan. I say this as someone who turned down or at least delayed appointments for dd1 when I felt they weren’t necessary. I turned down an mri in November as it was for information purposes (to try and diagnose her rare condition) and the height of winter illness time. But in this case, I would go ahead.

I'd imagine she was trying to reassure you that almost all children referred to a respiratory consultant will have a ct scan ie that it's a perfectly normal procedure in the pathway for evaluating ongoing respiratory issues in children.

And of course she's allowed to tell you that - unless she gave you the names and addresses of the other children, it's not confidential information.

OP, are you able to discuss the risks and benefits with your consultant openly to put your mind at rest?

I understand the radiation concern as my young DC also needs regular x rays and will require a CT scan. Your questions are valid (although they'd never be scanning for teaching purposes or data, or anything other than the child's interests) and actually I think it's something most people are oblivious to. That said, the radiation doses now are very small, significantly smaller than in historic papers on cancer risks which are already very small. The no threshold model is also questioned by some radiologists, meaning there is even less harm.

It sounds like your DC does need this scan and the risks are extremely small but if you can I'd discuss it just to put your mind at rest, as I did. To those scoffing though, it is worth discussing because yes sometimes x rays at least are done as part of standard procedure when some views aren't necessary. We've saved our DC several this way by asking if a view was needed because the consultant request was very general, and when we've seen him after he has confirmed just the one was needed.

I've never known a child who needed a CT scan

My DD has had numerous x-rays, a CT scan and a brain MRI. She started at 14mo. No one is thrilled their kid needs these kinds of exams but clearly they are needed. The children's hospital she attends always has long queues and waiting lists for all these exams, so she's hardly the only one there!

My son has congenital health issues, had his first surgery at 6 months, countless xrays, cts & mris. I do understand feeling overwhelmed, but the only time I wanted to run away & not put him through it was on the morning of one of his biggest surgeries. BUT - I don't know best. I never did. I knew a lot as I'd lived with this, but you have to trust that the consultant is doing what they need to do to have the full current picture. I wouldn't be happy to have a child with your DDs history who wasn't being given a ct!

It is scary, but it is necessary.

We would only ct a child if we had concerns. They can't give you clear answers because they don't know yet. There are so many differential diagnoses but this short test will give them a much clearer picture. Its safer that giving your child recurrent courses of antibiotics and steroids without knowing exactly why. If she has already had this much going on at her age, you (and they) need to know why. For reference, we sometimes refer newborn babies for ct too. Its based on weight and we would never do it unless we needed to. The wait list is long, its needed in emergencies and it costs the NHS money. Finally we would NEVER do a test just for teaching!!! Sometimes for research purposes, but only when approved by ethics and consented as research by the family.

@worriedmama16 where you say is that something they’re worried about and not telling you? Wasn’t it in your original post regarding interstitial pulmonary process?

I’ve very much assuming this is what they will be checking for. After a child needing that length of antibiotics that could have definitely resulted in scarring.

I definitely think before the scan you should speak to the consultant so you feel your questions have been answered and you will be reassured.

However I would like to add if you refuse the scan they will make you sign that you are going against medical advice. I’m only pre warning you of this as when they then mention it, it can become of a shock and seem very formal.

I would also advise a medical secretary do not have any medical training so are limited to what they can answer. It would not surprise me that in a Children’s respiratory unit that 90% of patients have ct scans as most children are not unwell enough to be referred to a children’s respiratory unit.

X

Yes radiologist said interstitial pulmonary process, consultant said bronchostatis??
When I googled interstitial pulmonary process I found some really scary stuff.
Although my dd history reads bad I just doesn't seem that way with her yes broncholitis when she was small, loads of babies get that, than many episodes of viral wheeze which always occur between October-April. In the summer nothing.
Each winter she has had less episodes than the previous.
The pneumonia was September and I don't think it completely got better hence again an infection 4 weeks later. The last X-ray was 6 weeks after that and that was when she was given the 4 week course of antibiotics.