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

Thinking of you today

My heart breaks for you after your last update.

For anyone else reading this whose young child is presenting with repeated headaches and nausea for anything longer than 2 weeks, push and push and push for them to be seen by a specialist, as the OP has done. Ongoing headaches in a child of 7 isn't normal.

Sending you love and strength OP x

I’m so sorry to hear this OP. It’s terrifying how much life as you know It can be shattered so quickly.

You and DH must be distraught, I can’t even imagine how scared you must both feel.

The best of luck going forwards x

Sending you all the best OP. Good work trusting those instincts.

This is the place to vent. This is the place to say things you might bottle up in real life.

When you're going through terrible times it's hard sometimes to lean on your partner because they are going through the same thing.

Lean on us here x There's endless knowledge and good will here for you 24/7

Love to you and your boy x You'll both get through this

Well done for pushing OP,. No one wants to get the news you got yesterday but as others have said, this knowledge is now the start of turning things around.

My baby DS got a difficult diagnosis and from that moment it was like we had unlocked “NHS premium” and suddenly everything happened so quickly, we whisked to a specialist hospital and looked after brilliantly. There was an immense relief in feeling DS was in safe hands and getting the treatment he needed (he is a robust healthy 5 year old now). I am sure your DS is going to get that standard of care, the NHS can be unbelievably brilliant when it needs to be.

Sad but glad you're where you are and that he's being seen quickly and that they'll remove the tumour on Monday. So bloody scary for you and your husband! All my thoughts will be with you in the days to come. I don't know you but I went to bed thinking about you and this was the first place I looked this morning. Will keep checking and hoping and praying for a positive update when you have the time.

I an sorry you had to fight to get where you are. It shouldn't be like that.

I hope scan goes well today. The JR is excellent. Keeping everything crossed for your DS.

I hope you receive good news at the scan today.

My uncle had a brain tumour surgically removed about 10 years ago and he's doing well, fingers crossed for your son.

I'm so sorry to read your update but hats off for pushing for a diagnosis so that he can now receive the right treatment. He's a lucky boy to have you in his corner.

Sorry to hear, my heart aches when I saw your first post and angry at the same time. The doctors dismissed my son's illness and turned our lives upside-down, we are still suffering from their missdiagnosised consequences after 2 years.

I hope your son can pull through this.

A mother always knows.
Things are moving quickly.
Sending lots of love to your family

So sorry to hear this OP. The JR is excellent, our son was born there and we’ve been under their genetics team for years now. You’re in the right place.

I’m not a doctor but I’d say the fact this has been ongoing for seven months is hopefully a positive sign, as it implies to me it’s not a fast growing tumour. I hope the surgery goes well.

Good for you for pushing this with the doctors. Mums are experts in their own kids. I wish doctors would listen! Best of luck with the treatment. x

What an amazing mum you are for pushing for your son to be seen, it wasn’t the outcome you wanted, but now treatment can spring into action and make your Das well again. And the JR is an outstanding hospital, you are in safe hands there.

My nephew had a large brain tumour (size of a grapefruit), removed 10 years ago. He made a complete recovery and is living his best life.
Thinking of you and your sweet DS.
Lots of love and strength xx

Sounds like the hospital is getting its act together very quickly which is good news. Also you are such a good mum for pushing for a scan when you had an inkling something was wrong. Unfortunately the current state of affairs mean you have to be bolshy to get dealt with. Recently encountered this myself, eventually got referred and was operated on the very next day.

This will likely be the worst part, the uncertainty of what comes next. Things will be a lot clearer very soon.

a friend has been through similar with her son when he was 4 and it was a very very difficult time. She too had to push to get taken seriously. Two years on he’s healthy and my friend has nothing but praise for those that treated him.

You’re making perfect sense. And well done to you for pushing an MRI through. Best wishes to your son, you, and your family. Keep trusting your instinct and acting on it xx

Wishing you all the best and well done for pushing for your little boy. He's now in the best place and hopefully treatment goes well and he will be feeling better soon xx

You will never be far from my thoughts as you go through this. Been a PICU mother so have an insight into how life can be turned in its head. Love and strength to your son and to you and your hubby xx

It's normal to ask parents not to bring in a child for such a consultation whatever* *they have to tell you. Wishing you luck and calmness for your appointment.

Thank god for you pushing for an urgent referral, well done for that. I will keep you all in my thoughts and wish you all the best for a positive outcome.

@nearlymumof5 vent all you wish, you are absolutely justified and if you have the strength later should raise it formally.

I hope you are being supported - your user name suggests you are heavily pregnant as well.

I hope all goes well from her. With love.

Thinking of you OP and wishing for a full recovery with your little boy. So glad you pushed for the scan. Mother's instincts.
Lots of hugs

Such a traumatic time for you all. Here’s hoping for the best possible outcome.

Sending positive thoughts and prayers. You are doing an amazing job for your boy. Well done for pushing so hard, you are making perfect sense and are doing your absolute best for him. Thank goodness you are in the right place now