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Original poster

MRI offered, should I accept?

21 replies

MangoMonster · 07/11/2011 21:07

what would be the main reasons for doing an MRI? DS seems not to have any severe mental disability although he has asd and visual impairment. He's responding well to ABA\VB.

Should I get one done or is it overkill?

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madwomanintheattic · 07/11/2011 21:19

yep. do it.

you know 'what', but you don't know 'why'.

evidence of brain injury or abnormality would be a fairly concrete answer to 'why'.

that said, if 'why' is not of interest to you, and not likely to be of interest to ds in the future, there's no real reason to bother as long as you are happy with support and progress.

that said, i have a friend whose eldest son was dx with asd v early etc, who eventually had an mri for an unrelated reason at around 8 or 9. they actually discovered he has several abnormalities with his brain formation - which in hindsight reflect perfectly the difficulties he has. he still presents as though he has asd, and they use it as shorthand, but they know it isn't actually asd. so it hasn't changed his therapies, but...

the hospital now monitor him regularly for growth or changes in his brain, as he is more at risk of malignant tumour etc. they later did an mri on his brother (who is apparently nt but had several months of severe headaches) and discovered the same (but much more minor) abnormalities - so they are now monitoring them both for changes. on the outside, the asd dx was perfect and there was no reason to suspect anything else.

madwomanintheattic · 07/11/2011 21:19

didn't mean to suggest they would find an abnomality btw - but it would at least rule that causation out.

IndigoBell · 07/11/2011 21:21

I'd get it done to rule out some very weird thing you have a minuscule change of him having.....

blueShark · 07/11/2011 21:33

Does the gp or paed refers you to get one done? I'd certainly do it despite all the progress that DS has made

dolfrog · 07/11/2011 21:45

MangoMonster

MRI will become one of the diagnostic process in years to come, there are various technologies being used regarding how the brain works or does not work, to identify how the brain reacts to specific stimuli in specific areas or what areas of activity may ocurr to compensate for an other area of brain inactivity.

fMRI has been an important too to help researchers understand the underlying causes of dyslexia over the last 2 decades, it like a microscope able to identify activity in specific areas of the brain, rather than just taking a large overall picture. And Researchers are still trying to work out how all the areas of the brain work together to perform the various task we perform every day. And so each scan they do ad to the library of research that demonstrates very subtle variations between normal and abnormal, and the areas of brain activity that processes or transmits different types of information.
And your DSs scan may only be precautionary.

dev9aug · 07/11/2011 21:51

We were also offered this and blood tests, but we haven't made up our minds yet. We decided to focus on the what and mve on rather than the why... But they did tell us to get in touch for a brain scan if ds starts to lose any of his skills...

dev9aug · 07/11/2011 22:07

What they are probably looking for is some sign of trauma/abnormality in the brain. I would get it done if it was offered to you, we decided to wait as we had one done when ds1 was discharged from hospital last year....
Agree with the posters above that it is more likely to be precautionary...

Original poster

MangoMonster · 07/11/2011 22:08

Thanks for your responses. I hate the idea of him having another general anaesthetic. They carry risks, don't they... Although I would like to have the test, I'm not sure about the anaesthetic...

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dev9aug · 07/11/2011 22:14

Mango,

Anaesthetic was the reason why we didn't go for it this time.. Otherwise I would have had it done as well... We were told by the paed when she saw ds that she can't see that there would be any benefit for us doing it, but she would have insisted on it if it were a disability where movement of limbs was impaired. hth's.....

oodlesofdoodles · 08/11/2011 11:43

Our ds has had two MRIs both came back normal. He now clearly isn't, so for us it just created a false sense of security. However it may be of help to your dc.

oodlesofdoodles · 08/11/2011 11:47

Dev has your dc spent a lot of time in hospital?

yomellamoHelly · 08/11/2011 12:41

We said no to one for a couple of years. Had one done in end to bolster diagnosis for further arguments with LEA. Completely turned everything on it's head and I am glad we know what's in store for us all. But in terms of day to day therapies etc. nothing has changed.

dev9aug · 08/11/2011 14:51

oodles
Ds1 was a premmie, he spent the first 3 months in scbu. We had issues with his lungs and severe reflux so he was under the care of the hospital until early this year. Physically he is fine now. It is only recently that he regressed and his development issues have started becoming obvious.

Original poster

MangoMonster · 08/11/2011 20:00

I'm so confused about this. I really want to do the test but worried my neuroticism is putting DS through an unnecessary procedure.

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Original poster

MangoMonster · 08/11/2011 20:01

Not sure neuroticism is a word...neurosis? ;)

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madwomanintheattic · 08/11/2011 20:07

if it was 'unnecessary' they wouldn't offer it. well, necessary being used in the context of 'might show valuable information which could aid or confirm dx'. they don't offer mri if they don't think there would be any benefit at all - total waste of a finite resource.

but it's reasonably common for parents to turn them down. usually because they have less faith in a medical procedure than, well, a medic.

not neurotic. just normal parental anxiety.

Original poster

MangoMonster · 08/11/2011 20:17

The thing is, paed was doing it as part of routine for dev delay, he didn't seem keen encourage us doing it. I would never turn down a test if the doctor was insistent. He almost said it's not worth the negative aspects of the procedure. Although he doesn't believe DS has asd. He's a heart specialist. Have been referred to a community paed who might have a different take on it. The other paed thinks I'm neurotic for sure...

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madwomanintheattic · 08/11/2011 20:30

well, it is routine for investigations for developmental delay. to rule out (or in) delays or difficulties caused by brain malformations or damage. so whilst it may not change the treatment for specific issues, it might mean that they know why the issues exist.
if an mri is inconclusive, or completely normal, it's possibe that they may decide that genetic testing might throw up some answers... but they are all routine diagnostics.
in theory, once you know the cause, you can be more certain that the treatment is correct.
sometimes you never find the cause. it all depends on whether you are happy not to know. lots of people spend years trying to determine causation.

but if it isn't important to you to know why, then it probably isn't worth doing at this point. it's such a personal decision. some people are desperate to have that question answered, and some aren't.

it's a bit like antenatal testing. if you aren't going to terminate for downs, then why bother to find out? (or... i need to know so that i am prepared for the future?) everyone has their own stance on testing, whether it's antenatal or an mri that might or might not show something...

all paeds thinks mums are neurotic. it's part of the job description.

Original poster

MangoMonster · 08/11/2011 20:37

Ok, will discuss it with dp, although I think he'll be against it. I really do want to know the cause. We have had genetic testing and should get the results this month. Basically I want to do it, as I'm the kind of person who likes to be thorough but worried that dp and family will think it's overkill and looking for a problem when he's doing really well on ABA.

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oodlesofdoodles · 08/11/2011 21:01

Hi dev sorry your boy spent so long in hospital. My ds also spent a long time in picu as a baby and now has asd so I'm always interested in others experiences.
I hope your boy is making good progress now you know what you're dealing with.

Mango sorry for the hijack. Re MRI why don't you wait for genetic test results first? As I understand it genetic tests for asd are pretty vague, but it might possibly shed some light.

Original poster

MangoMonster · 08/11/2011 21:04

Thanks oodles will do, no worries about hi jack, the more the merrier :)

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