Worried about MRI

[Plm28]

Hi,
Just wondering if anyone has any experience of children having an MRI? Or any experience of dealing with Macrocephaly?
My little boy is 19 months old and has always been on the 99th centile for head circumference, he is quite tall and a good weight so as he was in proportion his HV monitored it for a while. On his 10 month check they discovered he was slightly
behind developmentally so pushed for a gp review and paeds appointment. His head measurement did jump a centile but not sure if this was a difference in who measured it as had been a steady growth since being born. They decided to refer for an MRI just to be cautious but didn’t think there was anything going on.

This was 6 months ago and still waiting as they didn’t think it was urgent, however now he is still not walking so the GP has pushed for it to be urgent and now it’s going to be within a week, and I’m so anxious. I’m really overthinking about the fact it’s been made as a priority. Development wise, other than not walking or standing independently, he’s not doing too badly, he has about 5 words and is now doing all his gestures which is what they were originally concerned about. He has always met his milestones later than “normal” but very much does things when he wants in his own way!

I am terrified there might be something more going on and I’m so worried for him having to go through the anaesthetic. Has anyone been through similar?

Yes but for different reasons - in our case craniosynostosis.

Ds4 had his first mri at 1 day old, followed by a ct scan under general anaesthetic at 6 months. In his case they were trying to ascertain whether he'd need surgery and whether his craniosynostosis was part of a wider syndrome which might affect his development (it wasnt).

I won't pretend it's not a worrying time because it is (I was particularly worried by the ga and terrified by the thought of surgery but the nagging uncertainty about the future was by far the worst). The thing is - the future will unfold regardless and having some information about what might be happening can only help you access support if you find you need it at a later date.

Thanks for replying, how is your DS now? That’s so much to go through so little.

You are right, we did start to question if he really needs it as he seemed to improve on a lot of things but I think we would regret not doing it.

He's fine thank you. He was diagnosed with autism as a teen but that has nothing to do with the craniosynostosis and, for all the difficulties that it can cause, it's a long way from those dark early days when we feared that he might never develop beyond babyhood neurologically.