To think “ASAP” for a brain scan should be fast?!

[SinkGirl]

My 20mo son saw an ophthalmologist 10 days ago. They found something potentially serious, possibly an indicator of a genetic disorder which could explain ongoing health issues since birth. He told me he would need an MRI scan.

I’ve received the summary of his appointment which has been sent to his paediatrician and it says he’s arranging the MRI “as soon as possible”. Wouldn’t “as soon as possible” for an MRI on a child be pretty bloody soon? We don’t have another appointment until August so seems like we won’t get any results until then anyway, I’m just really anxious about the anaesthetic and want it over and done with.

How quickly would you expect a scan in this situation? My idea of ASAP may be way off reality!

My baby son needed an MRI recently and I think it was about 3 months from referral to scan. Don't worry about the anaesthetic- it doesn't take very long and they are very carefully monitored and well cared for. Good luck to you and your boy

in reality you'll probably be waiting a month+ children's mris can't just be done at any hospital like adults. However you can ring and ask to be put on the cancellation list to possibly get a short notice appointment

It must feel very worrying for you, but I guess they have to keep space available for truly urgent cases- eg for a child with something life threatening who could start deteriorating.
So I suppose in a sense the longer wait should be reassuring in that although you want answers, this isn’t an emergency situation.

It depends on the terminology your hospital uses.

'As soon as possible' sounds to me like the code for prioritisation below urgent (cancer, other things that could kill you rapidly) but above survellience/routine.

Urgent means within 2 weeks, priority within 3 months (?) and routine after that.

It takes about 2 weeks for a scan to be 'read' by all the right people (the MRI experts for the report and your doctor to make sense of it in terms of everything that's up with the patient). Allow a bit extra during August for the holiday season, and I'd expect that you need the scan take place no later mid/late July.

Waiting for tests and their results can often be the hardest times when dealing with a medical issue. Is there a specialist nurse on his unit who responds to emails? Because asking for their explanation of the timetable, and knowing that someone is making sure it all fits together, can be reassuring.

Thanks all. I’m sorry, I’m just an emotional wreck. I was starting to feel better after the shock of the appointment but seeing it in black and white has set me off again.

The condition they suspect is not usually life threatening, although a subset of sufferers have a related adrenal issue that can be fatal. So I do fully understand that it’s not an emergency, and totally understand the constraints they’re working within.

I asked the consultant at the time whether he would have had the scan by the time we see him again and he said yes we would, but that all I know. He hasn’t seen a neurologist and I doubt he will unless the findings are as suspected. He’s had a lot of health issues since birth - a very rare condition and a team who, although lovely, didn’t really understand it so until recently I have felt that things weren’t being taken seriously enough. I’m so grateful to the ophthalmologist we saw, who I contacted to see if he could see my son privately due to such a long wait on the NHS, and when I told him about his history and issues he had his appointment brought forward to the following week. He has really done us a huge favour as his original NHS appointmeny date is still 6 weeks away.

It’s complicated by the fact that fasting can be really dangerous for him, so they’ll have to put special measures in place for that I guess. I just want to know what’s happening.

We don’t have anyone to contact unfortunately - I can email his paediatrician but she hasn’t been involved in this so had no idea about it when I contacted her last week. I just have to try and be patient!

Bunty, I hope your son is okay

Is it adenoleukodystrophy they're thinking of? Or septo optic dysplasia? Either way it won't be done super urgently because of its a genetic disorder this won't change the management. If it was for a brain tumour that would be urgent as it does affect treatment. The issue with children and mri is not just that they ate only done at specialist centres with paediatric Anaesthetists but also only specialist radiologists are able to interpret them as the brain changes with age.

My dd required an urgent mri brain scan from an ophthalmology appointment. It was around two weeks or just under to get it done.

OP. Hope the scan date comes through soon. I would contact the radiology admin staff directly if you don't get an appointment letter through soon, they are likely to know more about where the request is up to than the consultant who referred you.

Cariadxx yes, they suspect septo optic dysplasia. I can only seem to find minimal information about it so I don’t really know what we are dealing with if that turns out to be correct. It would seem to make sense - optic nerves underdeveloped and a squint which isn’t related to long sightedness, severe hypoglycaemia from birth (was attributed to hyperinsulinism but they told us that resolved and he now has a diagnosis of Ketotic hypoglycaemia which doesn’t seem right to me, IUGR, now developmental delays but they’ve happened quite suddenly - he was doing well until March. That’s the hardest part - the big change in him that’s happened so quickly. Part of me is concerned that there’s something else causing this sudden regression and if they found it they might be able to improve his outcomes, or if I’d been enough of a pain and nagged at the doctors earlier it could have been prevented. That is probably unrealistic though. Really struggling as his twin has no difficulties and seeing the gap between them getting wider all the time is really hard.

I’m not even sure which hospital they’d do it at so not sure who to contact - if I don’t hear anything in the next few weeks I’ll try to do some digging.

SluttyButty hope your little one is okay. Was that related to their optic nerves or did they find something else? It’s such a worrying thing to go through, I hope you’re okay too

Where in the country are you? It would need to be done in a proper children's hospital

Dh has been waiting for one for 2 months - exploratory, no real indication of anything truly urgent.

If it was something life threatening you'd be in straight away probably.

for the wait though, I can imagine you must want it over and done with.

We are in Dorset so I suspect it may be southampton, that’s where we’ve had to go to see a few specialists in the past.

Thank you @SinkGirl my baby is fine. He does have a sensory impairment and it has taken a long time to come round to the reality.You are at the most difficult stage which is waiting for the big picture to see what you're dealing with. We had multiple tests on his vital organs, gene testing etc to try to figure out if he had any genetic syndromes but thankfully he doesn't.

Just take one day at a time and always remember, he was given to you for a reason

@sinkgirl yes you would have to go to Southampton

@SinkGirl, dont know where you are in Dorset so whether its helpful or not but they can do childrens MRI's at Dorchester as well as Southampton, my son has had them at both hospitals, he is 4 (if you can go for southampton do, infinitely better)

sinkgirl optic discs not nerves. She's fine now but they found something else on the mri that required surgery but we had no idea she had.

I hope your appointment comes quickly, I did get my Gp involved at chivvying them up because everything was initially so urgent that things got into a mess with referrals and tests. Gp was brilliant and got everything moving for us.

My daughter was referred for brain and spine scan and classed as urgent, I was told this would be within 2 weeks but it actually ended up being closer to a month!
Your son is at the age where he will most likely need to be sedated so they are probably trying to organise that, try not to worry too much, wishing you luck.

Oh and as far as I remember it was a few months wait for both, same kind of scenario, it needed to be done but not urgent. In fact for his last one he was bumped off the list 2 days before for an urgent case and we had to wait another month (disappointing for us but we obviously did not mind, just glad not to be an urgent case ourselves)

I needed an urgent fetal mri following the 20 week scan as they found my baby has ventriculomegaly and an absent cavum septum pellucidum. It took 3 weeks to get the mri then a further 2 weeks to be told the results. Septo optic dysplasia is one of the conditions my ds is being tested for, though he has seen opthamology since being born and so far that has been ok, his brain is still abnormal and there have not been any endocrine problems yet. There is a good support group for parents with children with sod on facebook. They will be looking to see if any of your baby's mid brain structures are missing or abnormal like in my son. 60% of people with sod have a partial or absent csp like my son x.

Wouldn’t “as soon as possible” for an MRI on a child be pretty bloody soon?

Not necessarily. Your child has lived 20 months with this condition. This might sound completely harsh but a child who has fallen and has a brain injury will take priority, as will people with many other conditions.

I know as a parent your concern is your child but healthcare is given on a 'needs' basis.

So sorry so many of you have been through similar issues- the waiting is so hard.

He did have brain ultrasounds when he was in nicu, they never really told us why - I remember seeing that there were a couple of questionable things in reports, but when it was repeated they said it was fine. Then his head grew really quickly and they did another one when he was several months old, they said the fluid around his brain was at the top of the normal range but that was it.

I’m hoping that if there were issues with the structure of his brain they would have been picked up in those ultrasounds but I don’t know if that’s the case.

sashh firstly, at no point did I say it was urgent or should take precedence over anyone else. It was his consultant who said it needed to happen “as soon as possible”, not me.

Secondly, he may have been living with whatever it is for 20 months but his development is deteriorating (from a child who could sit and use a complex shape sorter for a long period to a child who does nothing but walk up and down the room or play with his toes, has stopped speaking etc) and he has a condition where his blood sugar can plummet to dangerous levels with no warning and no symptoms. This has been much more unstable since his development regression. So if there is a neurological cause for that, and if it’s at all possible that it’s something progressive, it seems prudent to find that out sooner rather than later.

Obviously I’m not saying he should have a scan before a child or an adult with a head injury or suspected tumour, that’s a ridiculous thing to suggest. I’m pretty sure in my position, where you’re watching your beautiful and smart toddler deteriorating before your eyes, you’d want something done pretty damn quick too.

I suspect that as he'll have to have a general that will delay it.
DS 10yo had MRI a month ago. I was a bit alarmed as he got referred on the Wednesday and was phoned on Friday for MRI the following Monday. But they said because he didn't need a general they could fit him in much easier so it was quick.