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]

I’m so sorry to read all of this OP and am sending you and your lovely boy so much love.

From a practical point of view for his birthday, ask to speak with the play team today. They will be able to arrange some decorations and a present even if you don’t feel much like celebrating. They don’t usually work weekends so try and grab them today if you can x

I'm so sorry OP. You're doing brilliantly and your son knows he's got an amazing mum. All positive thoughts for you and your precious boy

Praying 🙏 for a positive outcome for your lovely boy♥️.

Sending you and your family so much love and strength OP. Just read all of your posts and the tears started on your update. Thank goodness you trusted your mama instinct. You are incredible.

Oh OP I am so sorry for what you are going through. Please hold on to hope. My ex SIL had a brain tumour aged three, in the eighties. She is 100% fine now, totally normal, thriving. And that was 45 years ago. Things have vastly improved. Thinking of you and. your precious boy x

So sorry to read this and wishing you and family well in the coming days. It sounds like he’s in the right place to get the right care now. Well done you for persevering. Will be thinking of you, stay strong and be kind to yourself xx

Shared wards are a tough environment. I know you will still be reeling from everything that is happening and there will be a lot of activity today with tests etc. Somehow in the midst of this try to take care of your basic needs. If your body is used to having tea/coffee try to make sure you get hold of one. When you have a chance nip and get something to eat. And when your DH is there, nip out for ten minutes of fresh air. Your DS may be allowed to come with you if he's not about to be whisked off for a test. I know that fresh air, caffeine and food sound so trivial right now but when I was in hospital with DD, looking after these needs helped me to cope and the parents' well-being is really important. Take care

Dear OP, I am so sorry to hear your terrible news about your son. I am sending you and him my very best wishes. It will be a tough road you are all now travelling on but you will be strong because you have to be strong, you have no other choice. I hope the meeting with the consultants goes better than you anticipate.

I'm so sorry you've had such awful news, I don't have the words to say how sorry I am, but please know that you're all in my thoughts and prayers and I hope that you find some comfort. Your son sounds like a little fighter and he has a strong mum at his side. Don't let the doctor fob you off, and please make a complaint for the appalling treatment you've received, when you are strong enough x

Another one sending hope, love and strength. You're by his side and we're online by yours.

I’m so sorry. You are an incredible mum, it was your strength which pushed the scan dates forward.

I know it’s hard to retain info while your head isn’t in a good place. Definitely ask doctors if you can voice record them while they are explaining prognosis etc. Also, keep a list on your phone of questions so you don’t forgot what you want to ask.

Take an hour at a time and know that you will find strength when you need it. Keeping you in my thoughts.

I didn't want to just read and run - so so sorry to hear what you and your son and family are going through. Just awful. Shouldn't happen to any child. Thinking of you.

Sending love to all of you.

Not sure which hospital but guessing GOSH, Bham, or alder hey. I've only experienced one of those but from a practicality point, don't forget to make sure you have enough to eat and drink as you probably won't be fed when your child is. Birmingham had travel mugs you could borrow and a spot to put cereal in. They also had flats for longer term stays so you can cook.

This will be stressful and horrible in a lot of ways but there is more support than you realise now.

So sorry to hear about your DS.

I just wanted to share an experience we've had with DF. Just before Christmas they found a tumour on his brain, a little over two months later he'd had it removed. All NHS.

Once he was diagnosed we couldn't fault how quickly things moved along. Obviously all cases are different but I hope your DS finds the same level of treatment and care.

We are all with you, OP. You are not alone.

We're sharing your pain and fear, and hoping and praying for your little boy.

I'm so sorry your family is going through this. Wishing you strength and sending positive thoughts

Well done on fighting the system to get your son seen. It should not be that hard for something clearly very very urgent

It’s 11 o’clock so it’s time for a coffee and a croissant. You are absolutely amazing and so is your son.

Hey, OP. My dad had a brain tumor aged 8, the experience lead him to become a neurologist (he is 63 now).

You should know that for brain tumors, size doesn't matter. Actually the fact that your son has been symptomatic since September and the tumor has been growing for months (through your first doctor's incompetence) without any symptoms other than unilateral weakness, suggests a slow-growing, benign mass.

Good luck, it must be a nightmare.

Once this is all behind you and your son, please make sure to complain about your son's first doctor's negligence. They shouldn't be allowed to make the same mistake again.

Thinking of you and your DS today.

Sending love, hope and strength OP

OP.

I'm so sorry you and your family are having to go through this experience.
Well done to you for pushing the MRI, for trusting your instincts and advocating for your DS.
Ask him what he'd like to do about his birthday, perhaps he'd like to postpone it til he's home or maybe he wants to celebrate it and pretend it's not happening.
But he'll have hundreds of happy birthdays from all of us on Mumsnet.

I am so sorry to hear this news. What a horrible shock for you - I wish you and your beloved DS the very best.

I don't have much advice to import, other than to back up what others have said about Googling. It's the most normal impulse you can imagine, but it's not your friend. A nurse friend warned me against it when my husband had a tumour diagnosis (not in his brain) in 2017. She said to take things one step at a time, do as the doctors say and avoid Google. Of course, it's not the same when it's a child with a brain tumour, but the cruelty of the Google rabbit-hole doesn't change and if anything, it's even more unreliable than it is in the case of an adult.

Again, I wish you the best. Know that we are all rooting for you. Xx

You are doing great, you were on it before you even knew what it was and advocated for your son from the start. It must seem so overwhelming right now, but baby steps. Hopefully as more information comes to light, it will be good news and you can start to see a way forward. Everything crossed for you all xx

Being on the ward is hard. I hope you have a decent chair bed at least. I recommend some noise cancelling headphones, something nice to smell and a good easy read. I read most of the Strike novels in hospital, I don't remember a thing, but they were engaging when I need a mental break from reality.