Out of my mind with worry [Please read the OP's updates before responding - Title edited by MNHQ]

[YourRubyMaker]

Someone please just give me some hope I’m so stressed I can’t function , my 10 year old since sept has had a limp in one leg then it became a weekness in his arm and hand on the same side , doctor was useless and made me do it as two separate issues and make another appointment!!! Didn’t take me seriously and Had X-ray on hips all fine (obviously 🙄 ) I went to see another doctor who said im referring it for urgent peadeatric appointment (great so helpful ) and he wanted to refer for mri but couldn’t , appointment comes thro and it’s in fucking June !!!! And that’s a urgent referral , in the mean time it’s got worse and now he can’t run and often stumbles and falls doesn’t use the arm hardly at all , have taken him back and they’ve now booked a mri brain scan for next weekend , which happens to be on his birthday of all days 😭 he’s mental health is shit as is mine and he’s obviously worried , how long does a brain mri scan take please ? And has anyone ever experienced issues like this and it not be something life threatening, I also have a toddler so am still having to be normal and do normal stuff where as I just want to lay in bed and cry

• [Message from MNHQ - please see OP's updates before responding]

As a mum of a 10 year old I couldn’t read the thread and not respond. Take it one day at a time and know there are people here thinking and praying for you and your family. have you got real life support too? Lean on them but one hour/ day at a time

I’m sure you’ve arrived at the new hospital now. Hope it was a good journey for you both.

Someone earlier mentioned keeping notes, which is such a good idea. A diagnosis like this is often when the NHS moves quickly and at its best, but it may feel bewildering. Make notes and ask about anything you need clarifying.

Also lists of what you need, I hope you have a good family network, but there was a thread on here about a similar situation and lovely MNetters took in food parcels, clothing, toiletries, games etc. I’m sure if you need anything, just ask.

You have a good network of people here, don’t forget to use us if it helps you. If it’s too much then back away. Sending hugs.

I really feel for you as my son was diagnosed with a tumor, in his case it was cancer, but obviously many are benign.
Things do happen fast after diagnosis and there will be lots of tests in the next few days to determine exactly what you are dealing with.
In my son's case the tests were done as an out patient as we were close to the relevant hospitals. I remember starting with an ultrasound and then xray, mri, CT scans, blood tests, needle biopsy and investigation into lymph node involvement.
Chemo was started a week after the first test.
Good luck with navigating the next stages and I hope it turns out to be benign.

Please read the updates before commenting

thinking of you op. You are in my thoughts and prayers. Sending strength x

I'm so sorry OP.

As little consolation as it maybe right now good on you for fighting for your little boy and getting the MRI much quicker.

Thinking of you and your son OP

Hi OP. I just wanted to say what an amazing mum you are. Seriously amazing. Thanks to your fighting and pushing to have your boy seen and taken seriously they have managed to find the problem. That must be so scary but one thing I'm sure of is that the faster they find something the sooner they can start to help your little boy and that's what matters most. You should be very proud of yourself.

I'm so sorry OP thoughts are with you and your son
I was posting to say my 2 year old had sudden onset limping but it progressed quickly to paralysis
The injection would have been for a special dye that they need for a more detailed MRI x

I’m so sorry OP. Please ask the nurses for a pen and paper to help you remember questions for the doctors if you cannot sleep. And a room to cry in once your child is asleep.
Ask for help, from family, friends, church people.
Your child has been incredibly resilient and fortunate already, trust them.
Please let us know how everything goes. Sending love 💕

Hugs and best wishes to you OP

We are all thinking of you and your son. Both of you are amazing and so brave xxx

Praying for you all OP. My heartbreaks for you. Remember to take care of yourself too so you can be as well as possible for your son xxx

@YourRubyMaker can you get grandparents to look after your toddler. your dh really needs to be there too so you can support each other. my heart is broken for you all.

Oh my darling - I am so, so sorry to read your update. Im praying that you get answers ASAP and that there is hope. Sending you so much love and thinking of your darling boy. You are not alone xx

usually if it’s bad news less than 48 hours, good news - months. It’s very much a case of no news is good news at our hospital.

wishing you and your family all the very best

I’m so sorry to hear this. Just to add that for suspected cancer referrals, the guidance is to speak to a paediatric doctor the same day to arrange assessment I’m surprised this didn’t happen with the symptoms. Hopefully you will get the right support now.

This. Try pushing. My 11 year old was admitted to hospital for a swelling under his throat and they did every test possible to try to find out why, including an MRI ( which was fine, he just needs to stay still, a nice play therapist spoke to him about what it would be like beforehand). He got an MRI within a couple of days.

Push at the hospital, at your GP, stress hard that he is deteriorating. If you get nowhere, go through complaints/ MP.

If you get nowhere with them and you can afford it, go private.

It actually states in the title to READ PAST OP before posting. At least read the updates from OP.

How are you both doing? You’re all doing so well, it sounds like a living nightmare. Thinking of you ❤️‍🩹

So sorry OP. My Auntie had a brain tumour in the 90s (1998 I think). She's in her 70s now and going strong.

Best wishes to you all.

You sound amazing and have done a wonderful job of getting your son seen earlier than he would have been.
You will be strong for your son despite the heartbreak and please remember that lots of children with brain tumours go on to lead normal happy lives. There’s one in our close family, she was 8, she’s now in her 30s and has a family of her own. Treatments will have improved so much since then.
Keep strong for your partner too and hopefully he will be strong for you - support each other and talk, hug and cry together. He may be dealing with it in a different way to you so try to understand each other.
Sending best wishes.

Just posting to send you love and hope for a positive outcome xx

Op, I'm so sorry to hear this news.

It doesnt mean much from a stranher on the Internet, but i wish you and your son all the best.

If you ever feel up to it, I would make@ a formal compliant with both the GPs and paediatricians. It won't change anything for you but it will force them to look at their process and what could be improved.

Thinking of you op and your boy. Is this weekend that’s his birthday?
children’s hospitals are often great with birthdays when they’re in. I know it’s not what this is about but it’s important to him

much love 💐

@YourRubyMaker sending you and your ds much love at this time.
You advocated for him brilliantly and I hope your/his care gets much better from now on.
In my experience the NHS is horrifically overstretched but when it's serious, everything kicks into gear brilliantly.