Significant delay for brain MRI for 1yo

[Worriedmummy06]

Hi everyone

My son has been referred for a head/brain MRI due to having a significantly large head that isn’t in proportion with mine or his dads.
He was referred by the GP in Feb, saw the consultant in March and I’ve just chased the MRI and they’ve said at the earliest it will be July as needs to be under general anaesthetic.

I really am not happy about this wait when no one can give me answers why his head is so large and have just said if he starts vomitting/screaming in pain then they’ll do a CT/urgent MRI (basically presenting with symptoms of brain tumour)

Does anyone have any advice to get this appt brought forward? I’ve looked into the private route but it seems impossible to get a GA MRI for a toddler.

GA MRI spots are like gold dust and the lists are based on clinical urgency (it could be taken a perhaps a reassuring thing that they don't think it's super-urgent). If things develop/progress then get back in touch with them so they can re-evaluate urgency. Can't imagine many places do them privately. (doi: anaesthetist that occasionally does MRI)

Only some hospitals can do GA MRIs on children that small, so they have to prioritise amongst referrals from across the region. Our tertiary centre has a routine waiting list of about 9 months.

Thanks both for the replies.

I’m really struggling with the worry. The consultant said ideally they’d get it done ASAP but as he’s not acutely unwell they don’t want to do a CT. I’m just wondering if there’s any way I can speed up the process but I’m guessing it’s unlikely. I’m just worried if it is a brain tumour, that’s potentially a few months delay in treatment.

Hi OP, if there was the slightest whiff of it being a brain tumour they’d have him referred under the 2 week wait which is standard for suspected cancers.

In terms of his symptoms, is he developing in line with standard milestones and his head is the only thing or has he got global delays too? I only ask as we had something similar with our now 3 year old. We were referred for MRI last Aug and still not had an appt through but have since had a diagnosis via bloods that explains a lot.

Thanks for your message.

He’s developing normally, in fact his speech is excellent for his age and was walking at about 9/10 months. He’s quite clumsy though and has a very prominent forehead. I’m hyper vigilant to every thing he does and can spiral into being convinced he’s got a brain tumour/cancer of some description. Bloods have shown he’s anaemic. It’s just the unknown of why he’s got such a large head that has flown off the centile charts that is causing me so much worry.

I echo PP who suggest that if they had any concerns about a brain tumour it would be done quickly. Had this with DD and she was blue lighted to our nearest major hospital and it was done within the week - they wouldn’t even let us leave the hospital and drive her over ourselves. - DDs head was a normal shape and size though. And she was fine - in the end they put her symptoms down to a virus and discharged us home within a few days!

DS had ( and still has) a massive and unusual shaped head and had also had investigations but these were much more drawn out. It was very stressful waiting - as I was really worried about it- especially given our experience with DD When we finally saw the neurologist they were able to use ultrasound - and they diagnosed a ‘ big healthy brain’ and yes he is very bright!

It’s a really hard wait - but the outcomes are not always the ones you are worrying about. Good luck with it

My baby's head jumped centiles, ended up seeing the paediatric neurologist who fortunately discharged us. Between the original worry from the health visitor at 4 months, and finally seeing the neurologist, baby caught up on other metrics and 'grew into' their head. The GP told us this might happen (but still wanted the neurology referral). Ultimately we had no investigations done as all deemed benign.

We did have a stressful trip to A&E for projectile vomiting while waiting for that neurology appointment - and even THAT did not lead to an ultrasound or MRI, because baby tested positive for COVID, so they were satisfied that the vomiting was explained.

We're waiting for an MRI for my daughter for a suspected tethered spinal cord. She's 5 and in pain almost every day. I did try to go private but yes, I also wasn't able to because of the need for a general anaesthetic. It's frustrating and stressful. The NHS is such a mess at the moment unfortunately, waiting lists are insane.

You could try contacting the consultant's secretary/other admin person to ask to be put on the list for any cancellations. Sometimes you get lucky that way, especially if you're able to accommodate very short notice cancellations. Not sure how applicable it is for GA MRIs, though.

This. I don’t think the hospital I work in has as long a wait time as 9 months. But there is still a wait. Unfortunately he’s just not going to be an urgent priority.

my child had 2 emergency MRIs last year and wasn’t much older - I was told it was really unusual to get them so quick as specialist child doctors who can interpret child MRIs are thin on the ground and they actually had to send the results to an external private company (it was done as an emergency due to rapid decline suddenly paralysis and suspected brain/spine tumour. There was also a wait due to the need for a GA - I would definitely recommend waiting for the GA - the first they did without it and it was just horrific and she woke up screaming in the machine. Not something I’ll ever forget