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

The waiting and not knowing is awful, everything plays out in your mind and it's torment. Once you know, you can move forward. (And I'm sending all the positive vibes and best wishes your way that there is nothing serious.)

Your son is so lucky to have you advocating for him, what an amazing mum.

I also just wanted to echo what some of the others have said, it's a great idea to take notes/record the appointment. My experience has been that it's perfectly acceptable and even encouraged.
It's so easy to miss things or to forget bits when you're highly anxious (and if there's a lot of information to take in). Or even to misinterpret/misremember things. And it's also not always easy to think on the spot about questions you might have so being able to go back over it all in your own time and in your own space is so useful.

Good luck tomorrow ❤️

thinking of you OP!

Sending love and best wishes to your little one, OP.

You’ve had some really reassuring messages here OP, but I can’t imagine how worrying it must be. All the best for tomorrow, I hope your son feels better soon.

Wishing you all the best xx

Sending my very best wishes for tomorrow xx

Sending lots of love . I've been in a similar situation, it's was serious but very treatable. Although terrifying at the time, I'm so very thankful they moved as quickly as they did.

Hope it goes well tomorrow.

If it's any reassurance, I think we tend to gravitate towards findings being cancer related. I'm always amazed by how many obscure medical conditions exist that us non medical folk haven't heard of.

I can think of a long list of niche medical conditions family and friends have had diagnosed, while being convinced it was going to be cancer.

💐
hoping all is ok

Good luck for tomorrow. Maybe take a note book and pen to jot anything down that is mentioned in the meeting so you can read it back later with a clearer head.

I'm really sorry you are going through this. I expect you wanted this MRI for a reason, and I expect you have a real fear and an idea of what this might be. None of us can say whether what you fear has become reality. But I want to offer you hope that, if this is a serious illness, this is the start of a plan to treat it, the start of you being listened to, cared for and believed.

There are people reading this, including myself, who have stood in your shoes when the doctor suggests both parents come to hear the results. Some of us then got the worst news possible and we got through that day. Most parents would agree that things look a lot better when there is a treatment plan. For now, your only job is to eat, drink, breathe, care for your children and then tomorrow you will find out what the plan is and who will support you.

So much love x

Sending loads of positive vibes and thoughts to your son for good news. Will say a little prayer for him before bed tonight

Good luck tomorrow OP. It's not always sinister - I had an MRI last year, also got told to go in for results. Was shitting myself thinking must be something if they called me in...

Nope. Dr talked me through the all clear and explained I'll be sent back to my referring GP to discuss other options for diagnosing my symptoms. It was very frustrating actually to take a morning off for a 5 min chat - like they couldn't have done it over the phone!

My DSIS had this with my nephew. In his case, he did need treatment. He's perfectly fine now and just goes back for annual check-ups.

Taking notes or recordings is great. If they mention any possible conditions/outcomes/treatments/further tests, you can also ask for any leaflets or information sheets about them. Often wards/consultants/nurses have leaflets available but sometimes they forget to pass them on to you.

I also know people who have been called back because an MRI was inconclusive and they had to schedule a repeat one or a different test, so it's not necessarily bad news.

All the best!

Big handhold here. I hope it’s nothing serious and will be thinking of you tomorrow x

I had similar with ds
all was fine, simply the consultant was going away and wanted to Get it sorted.

hope it's the same for you

Thinking of you and your family @nearlymumof5

Good luck tomorrow and well done for pushing for answers. Sending you all my very best wishes. x

Hi there

I saw this and had to respond. If it had been very serious they would have admitted your son immediately so please try not to worry. I know it will be really hard.

My son had a stroke aged six which was discovered on an MRI - he had a tear to an artery at the base of his skull and two bleeds on his brain. However prior to this we knew he was seriously ill because he had a blinding headache, became very grey and floppy and deteriorated so much over a day that by the end of it he couldn't walk or talk. He was sent to Great Ormond Street the evening before the scan and the diagnosis so they move fast if they think there's something really bad happening.

They may have spotted something with your son and it is better to know what that might be earlier rather than later. You will find incredible reserves of strength for whatever comes.

My son is 19 now and you'd never know. Sending you lots of love.

Hope it's nothing serious

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Thank you everyone so much, you really have given me so much comfort this evening and I’m feeling quite a bit more positive, and able to think a lot more logically! I will do my very best to update tomorrow, thank you again, wonderful strangers x

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