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!

Yes, he will need a general apparently (especially as he’s very upset my exams, the eye exam was horrific, can’t really blame him after everything he’s been through already). They may be able to do the eye exam again more thoroughly when he’s under as well, so they said. However, a general is really quite risky for him due to his hypoglycaemia so they may try sedation I guess.

Fingers crossed for you they find a slot soon. The waiting is so hard :(

Thank you - some days I’m okay and others I can’t think of anything else.

DD needed a sedated echo and it took 6 weeks for her to have it. She needs open heart surgery as soon as possible. We were told 3-6 months 6 weeks ago and haven't heard a thing. I guess as soon as possible means as soon as there aren't any more urgent cases.

Oh bless you Oyster, that’s so worrying. I hope you get a date ASAP.

When he was 9 weeks old and in hospital for whooping cough, an experienced paediatric cardiologist said he heard a murmur but all the other doctors said they didn’t. Nothing ever got done even though they were supposed to do an echo - I’m hoping he was mistaken

sinkgirl I believe you have Poole for an option too.
If a general is required, they have to organise getting anaesthetist, bed/space on children's ward, and MRI being available at the same time, which is going to take a bit longer than just organising the MRI, but you should have it before August.

Thank you - Poole is our closest hospital so hopefully it can be done there. I think he may need to be admitted the night before with IV access as his sugars will need to be monitored, and they’ll probably need to ensure he’s early in the morning to limit the fasting time, so that all adds to it really.

Quite a few DGHs do paediatric GA MRIs (I'm not a million miles away from you and work in one such DGH) so there are systems in place for dealing with kids needing this - please don't think that any wait is due to having to make special arrangements - wherever you end up having it will be experienced at dealing with these cases.

Obviously without knowing the details of your particular case.... some places try a 'feed and wrap' technique first - a lot of small kids will just fall asleep after eating and a cuddle in a blanket - can sometimes sneak them through the scanner in that time (obvs doesn't work for everyone though).

Re the fasting - if your child is normally able to take oral feed/fluids they will be able to have clear fluids up to 1-2 hours before a GA (guidelines are currently a bit fluid - most of us still say 2 hrs, some are happy with 1). Clear fluids includes dilute squash so hopefully that will keep the sugars up. There are plenty of other ways to keep sugars up if it turns out that squash isn't enough.

Good luck.

Thanks that’s really helpful - he made it to 15 hours when he had his last controlled fast before dropping to 2.7, but the other week he dropped to 2.4 out of nowhere so it’s very unpredictable. He has a glucose powder he can have when low which is completely clear when mixed (although I know that’s not necessarily the definition of clear fluids) so he may be able to have that but any time he’s fasting they seem to want IV access for glucose just in case.

Hi SinkGirl

You may have mentioned this already but did you mention the deterioration at his last appointment or has it happened since?

Yes, I told the ophthalmologist who’s referred us for the scan - I told his paediatrician too a month or so before but she just referred him back to the developmental team (the OT discharged him a couple of months previously as he was totally fine, so it’s all come as a big shock)

Ok that’s good. I can completely understand your anxiety

Dd had an MRI recently and what I found really helpful was speaking to the people in the process.

So the referral team or the hospital

Private insurance messed up so we have time in NHS the then back to private and also had a you’ve got ages status changed to this is more urgent

So when that happened I got on the phone and tried to understand where things were going and how long it would take

This might be what you’re doing, but I think knowing how you must be feeling I’d follow up on the phone

It must be incredibly distressing to see him deteriorate like you’ve described.

In your situation, however unreasonable it may sound, I’d want my toddler to have high priority for an appointment. The wait must be torturous.

I hope things improve.

Marsha I hope your DD is okay. I really feel I should have pushed things more and sooner, but I had no idea something like this could be happening. I’m definitely going to be more on top of things from now on.

When he was born and was diagnosed with this illness they said it was caused by being growth restricted rather than the genetic form which is permanent, and this seemed backed up by the fact he seems to have outgrown it. Didn’t occur to me there could be something that caused both the IUGR and the endocrine condition. His endocrinologist never mentioned this being a possibility, any time I raised concerns they were very dismissive because he was stable and doing so well. I thought I was just being paranoid.

Thank you osiris - it really is heartbreaking. We had a tough start, he was in nicu for months and it affected our bonding I’m sure but I have come to love his amazing little personality and it feels like he’s vanishing before my eyes. I obviously will love him to death whatever happens, but it’s a shock when you get to know your child and then they change so much. I thought maybe it was ASD and was getting my head round that, I didn’t consider anything else.

When I know what it is, I can deal with it - the not knowing is definitely the biggest struggle right now.

Thanks SinkGirl yes hopefully will be ok after surgery

I found the emotional side really hard
I completely understand what you’re saying about not knowing, I made some missteps but really if the experts do too, then it’s no wonder
The hardest part was not knowing and I pretty much booked an appointment with the first free slot I could find (with a good GOSH consultant) because every day felt like a lifetime and the earliest with the right person was three weeks

Since dd was a newborn I also signed up for NHS talking therapy but that waiting list is longer than treatment even though urgent

I talked everyone down to the ground and called my parents upset

And kept calling any one I could who could help me understand where her information was and where it was going next

So please try but to feel bad about not knowing, it’s so much easier in hindsight and not even experts are 100%

And also lean on people - for support and for information. I really feel for you the anxiety is so awful

And I had huge anxiety about timing, if I had acted quicker etc I think it’s normal but really hard

Hugs Marsha - it is really hard. He’s been through enough already and I just feel sad for him more than anything else. Every time I have to take him for another test or stay that leaves him distressed I feel like I’m doing a bit more damage to him. The eye test was so awful, three of us pinning him down in the end and he wouldn’t let anyone near his face for days afterwards. They bounce back much quicker than us though!

I bet : (

It’s also really hard on the weekend when you really want to call re something

I hope you get some help this week for your little ds

I wish people would stop making comments about how there will be life threatening cases taking priority. Obviously that's the case and no one is begrudging it. But should we really be happy with a healthcare system that means if you're not dying you can just live with your serious health conditions for months without answers and shut up- even a toddler who's now potentially got developmental delays? FFS.

Thanks Bunty - I know what you mean. I’ve found the whole process very frustrating. I told his paediatrician about his squint just after Christmas when the HV referred us, there was no concern that it might be connected or indicate a problem. Any time I’ve reported issues with his blood sugar it’s been blamed on faulty test strips or an unexplained anomaly. Even when I saw her a couple of months ago and discussed the extent of his developmental regression she just made a general referral to a developmental paediatrician. Given that these three separate things are hallmarks of a specific genetic condition you’d think they might have referred him for an MRI back then. I don’t know where we would be if we’d seen a less thorough ophthalmologist, who just happens to have a specialism in neuro ophthalmology. With the problems he’s had since birth I’d like to think that they’d have picked up on this more quickly but then I know some kids have serious issues go undetected for years so I feel I can’t complain too much. If I could go back I would definitely do some things differently.