Called back to consultant after DS brain MRI

[nearlymumof5]

hello, my DS aged 7 has been having nausea, sickness and headaches since November and through lots of pushing managed to get an MRI which was on Monday eve - we were told to expect results in 2 weeks. Today I received a phone call from the paediatric consultants secretary asking myself and hubby to go in tomorrow at noon. I’m terrified. Has anyone else got experience of this? What’s scared me most is that they have asked me to bring hubby. They have requested that we don’t bring DS. I don’t even know what I’m asking for on this thread, maybe someone that has been in a similar situation? Thanks x

Good luck tomorrow op

Take a pen and paper.

Make sure to get them to write down any words you don’t recognise

I do have some relevant experience having spent a lot of time on the neuro ward and honestly the best advice I can give you is Stay off Google until you’ve spoken to them!

once you know what you’re dealing with you can get up to speed but you’ll just drive yourself crazy Googling symptoms

Fwiw I have found paediatric neuro care to be exceptional

This is good advice.

Good luck tomorrow op

Take a pen and paper.

Make sure to get them to write down any words you don’t recognise

I do have some relevant experience having spent a lot of time on the neuro ward and honestly the best advice I can give you is Stay off Google until you’ve spoken to them!

once you know what you’re dealing with you can get up to speed but you’ll just drive yourself crazy Googling symptoms

Fwiw I have found paediatric neuro care to be exceptional

Hope everything goes ok tomorrow OP 💕

Thinking of you for tomorrow, OP xx

This... great advice.

Also het a secretary's direct number if you might have lingering questions or issues etc.

Best of luck tomorrow 🤗

Keep in mind that they share the worst situation/outcomes at first ...because it is easier to do this than to suggest things aren't too bad only to have to give bad news later.

(No=one minds when they find that the situation is better than first painted.)

Will be thinking of you tomorrow and am already wishing your DC well.

I am a paeds nurse- I used to work on paeds neurology! I think as you've asked it's only fair to give you an honest reply. I think it's likely they have found something they need to discuss with you both. However I would be reassured that some time has passed- although the MRI scan needs to be reviewed by a consultant to give an official report of findings, tumours, masses and the like are very obvious and it's more than likely they would be spotted immediately by the radiographer and flagged before even being seen by the doctor. In my experience cancers and tumours are almost always diagnosed the day of the scan. They also require immediate treatment so you would definetly be asked to bring along son. I would prepare yourself for some kind of diagnosis but please don't panic about it being anything life threatening at this stage as it is much more unlikely. Try and rest and get yourself in a good headspace for the meeting. Be sure to ask for the contact details of a specialist nurse before you leave the meeting so you have someone to direct any questions to in the days after the meeting. Good luck, fingers crossed for your DS.

Wishing you all the very best for tomorrow OP. And glad your boy didn’t have too bad a time of it this morning xx

Wishing you very good luck for tomorrow. It won't help at all, but I'll be thinking of you.

Tonight must be so difficult and worrying for you. I will be thinking of you tomorrow.

Oh OP, like everyone else, I’m keeping everything crossed that the news you get is of something simple, non dangerous and treatable.

But I know where your mind is going, and if it does turn out to be a tumour, then its worth you
knowing that there are many different types, and with children a good percentage are low grade ones often with an excellent prognosis. That’s not to say they aren’t serious, and horribly worrying, but even if you hear those words, the reality may well not be as bad as where your mind is taking you now.

Also, there are so many reasons that they can spot something on a scan that needs treatment. Some need prompt treatment, but will be quite simple.
Its actually reassuring that they haven’t asked you to return to the hospital tonight (with my daughter we were in surgery at a different hospital by the next morning).

My toddler daughter has a brain tumour. Hers was diagnosed within 20m of her scan. We had a long, and difficult stay in hospital, with complex brain surgery etc, and a high likelihood of further treatment, but its low grade and so its very likely that she’ll survive thankfully.
She’s currently snoozing next to me, and is doing great.
What I would suggest personally, is that you take overnight to get some of your ducks in a row. Its not like you’re likely to be sleeping well (though if you can get some, please do!), so you may as well use this period of time constructively.
Get a bag packed for you and your son. Make sure you have phone chargers etc. I’m assuming from your username, you have other children, and work out a continency plan for dealing with them.
Knowing that there is a plan in place will mean one less thing for you to worry about, and if (hopefully) the planning isn’t needed, then nothing is lost.
If its something that requires immediate treatment/surgery, then things may happen very quickly.

There are no medals for being strong in private – though putting on a brave face in front of your son is helpful. Do what you need to get through the stress of the next 24 hours.

PS: If you want to PM me, especially if its difficult news, please feel free to x

Waiting is always worse than the facts because your brain goes to worse case scenario.. best of luck 🤞

Saying a🙏 for you and your family. Huge hugs to you and hope all goes well tomorrow ❤️

Best wishes OP xxx

How stressful, sorry you are going through this. Hopefully can't be anything acute as they would want to admit your DS immediately for treatment?
I hope the appointment goes well for you all x

I'm just offering a handhold op. Just know tomorrow that we are all thinking for you.
I hope for the best out come for your ds.

That would suggest the scan showed something of some urgency. I am sorry and will be thinking of you and your family ❤️

Best wishes. I hope all goes well tomorrow xxx

Sending best wishes for tomorrow.
Take a pen and paper and atleast summarise the main points. If you can't. Ask the consultant to note them down for you.

Best of luck tomorrow op. I hope it’s good news

for you OP. Just remember that, whatever it is they want to tell you, it means that they are getting the ball rolling on helping your DS and that's what you want.

So sorry to hear this OP, you sound like an amazing mum and hoping that it isn’t bad news tomorrow- will be thinking of you xxx

Sending huge hugs and love for tomorrow hope all goes ok xxxxx

Best if of luck for tomorrow OP, positive vibes.