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 have a similar history with xrays due to repeated chest infections recently as an adult and had the CT scan which took seconds - they found a lump which was the cause of recurrent infections (had affected my lungs below). Not saying this will be the case for you but worth seeing I think!

Also the viral wheeze has improved massively, each winter they are less episodes, which is what I'd been told would likely happen. The infections were a new thing and to be honest, I don't think she recovered properly from the first one which led her to getting the second.

I had to have a CT scan a couple of months back, I was terrified of the radiation exposure but the staff reassured me and told me the scan is roughly the equivalent of about 5 airplane flights.

DS2 had 2 CT scans of his lungs when he was a child. He had recurrent chest infections and suffers with asthma. They'd take xrays and tell us his lungs were clear when it was obvious that they weren't. It was only when he had the CT scan that we found out that he had pockets of infection that wasn't clearing up with short courses of antibiotics. The first time, when he was 4 or 5, he had to have a 6 month course to clear it and the second time he was a teen and it was about a years worth he needed.

It never occurred to us to say no to the scan we just trusted the doctors.

I really cannot understand why you would risk your child's health for the sake of the radiation equivalent of a handful of flights. It makes no sense to me. She's had lung issues for a significant proportion of her life, has had repeated viral and bacterial infections and therefore the medics want to rule out if there is something underlying causing it all.

Surely you want to know this? She is not the same as you. Just because you grew out of it does not mean she will. Just because she is well enough in between doesn't mean there is not something underlying that makes her vulnerable to infection.

Take her for the scan. At the very best she will have nothing wrong and it's just one of those things, and you can breathe a sigh of relief and say "I told you so". The very worst doesn't bear thinking about does it?

I would absolutely give my child a CT scan. You're not medically qualified and the NHS definitely don't put children through scanners for shits and giggles.

Actually I think it would be negligent for you to refuse it

My child also had bronchiolitis at 9 months. He was very ill - was taken to hospital by ambulance and was on oxygen and an NG tube for a week.

Has never had a chest infection or similar since and he is now 11. So no, it's not perfectly normal to get repeated infections.

At what point did I say it was normal? And it most certainly happens to many children, it happened to me , others in my family and a few people I know.
Also she has had antibiotics twice In her life. She has not had repeated chest infections.

So don't go. They can't force you and clearly you know better than those who have spent years training and working as medical professionals.

Then, when she goes on to have prolonged problems as an adult, you can be sure you have a good explanation for your DD why you never followed advice. After all, all that radiation is just so scary, I'm sure she'll understand. 🙄

Look I have a premature baby who is now 3. He was born with extremely underdeveloped lungs and was ventilated. His respiratory history since discharge is much better than your daughter’s. (And he had bronchiolitis at 9 months). Honestly I was feeling anxious reading your OP! Get that CT scan. The NHS really really really doesn’t hand out CT scans unless they are necessary. This is your chance for an actual diagnosis or an all clear.
The worst case is that she falls ill again and needs a CT then and her lungs are more scarred. This is your chance to sort it out once and for all.
And no they don’t do CTs for ‘teaching’ purposes, they really don’t. They don’t even do X rays unless necessary. (In a 7 day bronchiolitis admission we had no X Ray because it wasn’t deemed necessary and he was a high risk baby who was needing oxygen).
Your daughter has had bronchiolitis.
Pneumonia
Chest infections
Repeated incidents of a viral wheeze.

And incidentally the last X Ray we had (in the US) during a viral wheeze episode my son’s chest looked lovely. In the word of the consultant ‘I would not be able to tell his medical history from this.’ Despite prematurity, bronchiolitis and what not. If there are changes in the X Ray don’t dismiss them.

So don't go. They can't force you and clearly you know better than those who have spent years training and working as medical professionals.

^This. Some people like the OP can’t be helped

Isuspect they like to gather as much information as possible about all children for teaching purposes. Is that possible?? Do they do that?
No they don't. They eould only do a ct scan if deemed necessary.

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?
It is not an obvious outcome, scarring in lungs can have long term effects - chest infections do not always leave scarring.

Surely if she was genuinely ill she would be like that all the time?
No - children are notoriously good at skipping around happily and then plummeting healthwise- it's why illnesses can hit them so hard and it can become an emergency very quickly.

My ds had a chest history similar to your dd's - a ct scan showed a pattern of trauma on his lung consistent with aspiration, and he was put on prophylactic antibiotics and a dysphagia diet to stop him aspirating liquids.

We have had to be rushed to A+E several times with his chest, having a full chest history has saved his life.

Please get the scan done.

If you don’t have any medical background then why are you arguing with medical professionals? They are trying to do their best for your child’s health and your trying to restrict them, yet I bet if they missed something you would be straight to the papers!

DS has had 2 chest infections in his life (he's 1YO); bronchiolitis at 4 days old and pneumonia which caused a partial lung collapse and needed 6 weeks of antibiotics to clear it. That was in October/November and when he had a repeat X-ray in December it was clear - no scarring. I took him to the GP multiple times in October when I knew something wasn't right, but because his chest "sounded clear" I was dismissed as a paranoid FTM. It wasn't until we went to A&E desperate that they scanned him and found it.

I'd suggest if you have medical experts recommending this course of treatment that you put your own misgivings aside and take it.

I think the fact that you had pleurisy and it left scars has made it seem like it's normal for you to have scarred lungs... it's not. And she needs a CT scan, which has the same radiation as a few flights; to see what's going on.

She could be fine but she could easily not be, even if she seems fine between episodes, and it's better to investigate it now than to risk anything happening to her, or something that would have been curable/treatable becoming worse.

The benefits outweigh the minuscule risks.
The medical staff are actual experts and they are acting in your child's best interests.
There is no conspiracy to scan a child for teaching purposes .
But you know all this don't you ?
Honestly I think your justifiably anxious and you're not thinking clearly .
Trust the experts and thank the stars that this test is available and free.

the OP isn't listening to any sensible advice. You've clearly already made up your mind as each new post is a justification. i think you're wrong, and being selfish by the way.

OP why won't you take her for the scan? As others have said, the NHS does not hand out scans willynilly. Take her. Hopefully nothing is found and she's fine.

I am going to take her. I wanted advice and genuinely believed it was over the top at this stage . I outlined why I thought the way I did , I am scared, I've never known any child who has had to have a ct scan , it's frightening.

You didn't say it was normal but you did say: "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)", implying that it was nothing to worry about ie normal.

Perhaps you should make an appointment with your GP and they can allay your fears.

What are you really worried about? Are you scared they're going to find something serious?

Sorry, cross posted. I'm glad you're going to take her. As you don't mention her dad, I assume he isn't in the picture. Can you take someone else with you instead?

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.

Her dad isn't in the picture , my parents are supportive, my dad thinks it a good thing my mum agreed with me.

I suspect they like to gather as much information as possible about all children for teaching purposes
Do people really think like this?

Dh did research in medicine. Tbf it is far easier to use a child as research than an animal. But you still need the test to be signed off, and the child's parents/guardians need to agree. They can't even just pinch results that had to be done anyway, without agreement.

Ds has chronic problems with his chest. A CT scan was a good way of them getting a much more accurate picture of the issues going on.

Scarring isn’t normal so it’s right they are checking things out.

A child going through any procedure is scary but if a consultant decides that an investigation like this is needed it will be with good reasoning.