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!!

Please go. Far better to be well informed and deal with anything now than leave it.

I've never known any child who has had to have a ct scan
But you probably haven’t come across many sick children in the course of your daily life, so what point are you trying to make?

my instincts tell me this is just a childhood bad chest that she'll grow out of
Instinct is not a rational process, particularly when you are (reasonably) hoping for a certain outcome.

And the suggestion that children get scanned to provide teaching material is, quite frankly, insulting.

Imo your questions and concerns are valid and should be discussed with her doctors. radiation is high in a ct scan, and shouldn’t be done without really good justification. Hopefully this is the case but it’s not always. I would want to know what they are specifically looking for, and what would happen/what would be the risks of a “wait and see” period. Then you can make an informed decision for yourself. I don’t believe in blindly accepting that doctors will always do what is ‘best’. Each doctors will have their own approach to how they treat/investigate. There is rarely a single ‘correct’ approach.

(My dh is a doctor, I have a lot of doctor friends, and I am a veterinarian, thus very familiar with disease investigation and use of diagnostic imaging)

Good luck op

It's better to take her and know OP. Even if it's something serious they'll be best placed to help make it better. I have everything crossed for you both x

Hi @worriedmama16

I know how scary it is. I work around radiation every day at the hospital.
Maybe some facts would help you make an informed decision. 😊

I’ve added some links with factual information on for you.

But a study in UK 2012 showed that for every 10,000 brain ct scans performed on a child between ages of 1-10 increases the risk of Brain cancer by 1 case compared to the study with no ct scans performed.

We also weigh up the benefit vs risk factor, no one would would approve a scan for anyone let alone a child with no clinical need.

www.safetyandquality.gov.au/sites/default/files/migrated/CT-scans-for-kids-Frequently-Asked-Questions.docx

www.safetyandquality.gov.au/sites/default/files/migrated/CT-scans-for-kids-DL-brochure-WEB.pdf

Thanks for that daisy

I’m glad you’re taking her and it’s totally natural to be scared. Read the info from @Daisy95, speak to her medics and keep away from Google. I hope you get some answers.

Yes I'm worried they'll find something serious, I'm also genuinely concerned that a little girl who's brain and body is still developing will be exposed to radiation.

They absolutely will not do the scan unless they deem it to be necessary. There are laws around that. They would be prosecuted if they didn't carry out this process. So there are belts and braces in place to protect your child.

The new law now requires that you're given information about the radiation dose and risk prior to the exposure. So please don't be afraid to ask the radiographer for more information.

You also realise that your child is surrounded by radiation every day. The CT scan is likely to be equivalent to 2 years natural background radiation.

I do realise we're exposed to radiation all the time but 2 years worth in one hit is a lot, especially for a 3 yo!

I understand that you're scared. I hated it when my youngest dd had to be xrayed every two weeks when she was one. As a parent it's a horrible feeling. I wanted to pick her up and run as far away as possible. But we went through what the docs said she needed and her life has been very much the better for it.

I have everything crossed that she'll be okay.

Peadiatric nurse here. No they don't do investigations on children or anyone just for teaching purposes. And they don't do CT scans on children for no reason. So just get it done.

Thanks, that's exactly how I feel. Just want to run away with her.

I do realise we're exposed to radiation all the time but 2 years worth in one hit is a lot, especially for a 3 yo!
It really isn't. And the radiologist last have to do a risk/benefit analysis legally (called justification) before proceeding.

It’s in your child’s best interests to have the scan. You are potentially risking her health if you refuse it.

Honestly OP, your concern about radiation seems extreme. Wishing you could run away with her is extreme. You might want to have a think about whether your anxiety is preventing you from thinking rationally.

The dose will be much less than 2 years background radiation. That is based on an adult CT chest dose. A 3 year old child would have a much lower dose for the scan due to them being so much smaller.
What you need to know from the clinician is how it will potentially change your daughters management and treatment. I would seek reassurance from them if you are still unsure. If it were my child however I would just have the scan done. There are children who need regular CT scans. As a one off I wouldn't worry at all.

Ok but would it be a one off? Surely if there was a diagnosis plus treatment they'd then need to scan again to check it had been successful??

I'm very concerned about this, i first met with the consultant at the end of December where he said, and letter to gp confirmed, that he'd consider a ct scan after our appointment in feb based on the antibiotics that he'd prescribed.

Early January he'd discussed the X-ray with a colleague and than went ahead and booked a ct for mid feb.
To me that suggests an urgency that suggests something quite serious?

When is your follow up appointment? Is it after the scan appointment? If you are worried about it being urgent I would just keep the scan appointment and get it done. You can discuss the results and any treatment with him after and make decisions on further scans if they are needed. Hope it all goes well x

Depends on your scanner @stressbucket. Tbf we have one now that would be v v low dose.

Definitely Paradyning! Dose reduction is improving all the time. I was referring to another user up thread that quoted 2 years as a reference. Probably from European dose reference levels. And making the point that a dose for a child would be considerably less.

You asked

People gave there advice

You seem to still be steering towards not doing the scan

Your child. Your decision

Your consultant has made a plan to diagnose and treat your DD over a period of 3-4 months, which is good practice. He or she has taken into account all previous test done and treatments given and decided a month of antibiotics is a good first step. he or she then has booked a CT scan to check the treatment has had an effect or the gather more information about your DD's lungs. In booking before your next appointment he /she is ensuring your DD is scanned in a timely fashion, rather than coming along for a follow up appointment, then deciding upon a scan, only to have to wait 6-8 weeks for the scan appointment.
After 3 major lung illnesses at such a young age requiring daily medication, I would totally expect a child to be fully investigated, not just for any scarring following the infections, but for the possibility of conditions she was born with which would be making her more prone to picking up infections. Just because you were not investigated for similar illnesses when you were a child doesn't mean to say this diagnosis and treatment plan is wrong. Medicine has moved on in the last 30 years or so since you were a baby.
Please take your DD for the scan, talk to the medical and specialist nursing staff, but please don't think she'll 'just grow out of it'.

They wouldn't give her a CT for nothing. They are extremely cautious about these particularly in children.

Look, I know you are terrified. I think your main fear is them finding something serious when doing the scan, and all these other irrational thoughts about radiation, scanning for teaching, your family history etc are your brain's way of denying this possibility.
It's better to know whether there's nothing wrong, something serious or anything in between. That way you can help your DD.

I'm not steering towards not doing the scan!
I'm certainly not happy about it, but I'll be asking a few more questions but if the dr insists it will happen.
Spoke to his secretary she said 90% of kids they see need a ct scan(respiratory dept)
How true that is I don't know

You aren’t a medical professional OP. You didn’t spend a long time at university studying medicine, you aren’t privy to conferences and training sessions that medical professionals attend either. I’m afraid that the ability to google things doesn’t put you in the best position to decide whether or not a CT scan is necessary. Listen to the qualified staff who are prepared to use limited and diminishing NHS doctors to treat your child and provide her with the best care they can.