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Original poster

Called back to consultant after DS brain MRI

990 replies

nearlymumof5 · 22/06/2022 18:08

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

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PuffyMcPuffFace · 23/06/2022 20:38

So sorry to hear this, OP.

The JR has an excellent neurology unit, you'll be in safe hands Flowers

PuffyMcPuffFace · 23/06/2022 20:39

So sorry to hear this, OP.

The JR has an excellent neurology unit, you'll be in safe hands Flowers

RestingPandaFace · 23/06/2022 20:40

I am so sorry to hear this. All good wishes to you all and I’ll be keeping my fingers crossed for you x

ThankYouStavros · 23/06/2022 20:41

Thinking of you all

ThankYouStavros · 23/06/2022 20:42

Thinking of you all

WhoAre · 23/06/2022 20:43

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This has been deleted by MNHQ for breaking our Talk Guidelines.

Shufflebumnessie · 23/06/2022 20:51

I honestly don't know what to say other than I'm so sorry. Thinking of you all.

Flamingosarepinkpinkpink · 23/06/2022 20:52

I'm so very sorry to read this, sending positive thoughts to your son and your family.

orangetriangle · 23/06/2022 20:52

Thinking of you at this awful time please keep us all updated if you feel up to it and it helps
21 years ago my dd was seriously I'll with encephalitis list speech understanding everything
Not going to lie it's the hardest thing we as a family have ever been through. She was just 4 at the time. We were told she would never recover but recover she sid and she now has a degree and is a primary school teacher
I was told there was nothing wrong with her and I was a neurotic mother within days thanks to a fantastic elderly paediatrician she was in Gt Ormond Street hospital
I have to say you are never quite the same person but boy do you come out strong and fighting and determined to advocate for your child
Wishing you all the luck in the world and take one day at a time and take all the support offered from school fp charities Macmillan were fantastic with my dadxxxx

silverboggle · 23/06/2022 21:03

Holding you and your lovely boy in my thoughts xx

Cleenery · 23/06/2022 21:06

I am so sorry OP. What a disgrace on the NHS that your son has been suffering since November and it's taken this long for any investigation. I am thinking of you all x

Assistanttotheregionalmanager · 23/06/2022 21:10

I’m so so sorry for you all. My heart goes out to you all. X

FabFitFifties · 23/06/2022 21:12

So sorry OP, I hope you have people around you to help and support, will be thinking of your lovely boy x

LateMumma · 23/06/2022 21:22

I'm so sorry to hear this, sending you and yours much love Flowers

LetsPlayShadowlands · 23/06/2022 21:23

You're an amazing mother, I'm so sorry your family has to face this new and unwanted journey ahead in terms of treatment. But your little boy couldn't have a better mum to hold his hand throughout it. Very best wishes to you all xxx

Zebrasandfairytales · 23/06/2022 21:27

Rooting for you all 💐

showpony007 · 23/06/2022 21:34

So sorry to hear this. Sending lots of love x

ilikemethewayiam · 23/06/2022 21:43

I’m so sorry OP, what a terrible shock for you all. I can’t even begin to know the worry you are going through. I’m sure the hospital will be able to provide you with all the support services you need, but I’m sending you all my thoughts and prayers.

SweetestCaroline · 23/06/2022 21:52

Prayers for you and your son. Keeping everything crossed for you.

Footballsundays6777 · 23/06/2022 21:52

Oh lovely thinking of you, I follow someone on insta who’s little boy has had the same news today - not sure if you are one of the same person , but either way thinking of you both xxxx

velvetblanket · 23/06/2022 21:58

op best wishes for treatment, whatever happens in the next days your son’s symptoms start improving soon.

My younger brother has experienced both a cancerous brain tumour, when he was 3 in the 1980s and a benign tumour whe he was in his mid 20s and was treated successfully both times. Even in 1980s Modern medicine was a wonderful thing for my brothers cancerous brain tumour and advances have just made things even better. I’m keeping you in my thoughts x

mathanxiety · 23/06/2022 22:00

So sorry it wasn't the good news you had hoped for.

But please take a little time to acknowledge that your DS now has a chance of treatment all because you pushed and wouldn't give up without answers.

Flowers
bookworm14 · 23/06/2022 22:03

I’m so sorry OP - I will be thinking of you and your son.

Dominuse · 23/06/2022 22:04

vivariumvivariumsvivaria · 23/06/2022 14:17

Practical things to ponder:

He is in a better position than he was last week - you can't treat what isn't diagnosed.

He's in good hands - they found it, they didn't hang about, a plan is coming, so his symptoms will start to improve and he'll feel better shortly.

He has access to the best of treatment, free, at the point of need.

If he has to go into hospital - get a couple of extra long chargers for all the gadgets. You both need a little bag with ear plugs, lip salve, some sort of shawl, cosy socks, a coffee cup to keep coffee hot in and a water bottle. Take a pillow or one of those bean bag head rest things.

It's worth speaking to your GP. You might need some support from them for yourself - you have to learn to cope with a whole bunch of hard and, you will, but something to help you sleep might be wise.

Well done, you saw it, you got him to where he needs to be. They'll take good care of him. We'll help you take good care of you.

This. It is in all our hearts and you ARE not alone. Every this poster said and the biggest most amazing squeezy hugs
plenty of lose change, long chargers, multiple socks.

you Have support on here and in real life- lean where you need to - take away etc

GoofyIsACow · 23/06/2022 22:13

nearlymumof5 · 23/06/2022 14:02

Hello everyone, unfortunately it was bad news. DS has a tumour at the back of his head measuring 2.5cm x 3cm. We are being referred to John Radcliffe and he also needs another mri with contrast dye. I’m feeling numb, hubby is a mess x

I’m really sorry to hear this. My DS had a pylocytic astrocytoma at the back of his brain when he was 7. He had it fully removed surgically and is now a massive 14 year old who is taller than me.
the one piece of advice someone said to me was write a hospital diary at some point each day. I used to get all my thoughts down each day. It has been so valuable to look back on because everything passes by you like a whirlwind.
recently DS read it, he was so surprised to read what we had all been through. Sending love and strength