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

1000 replies

YourRubyMaker · 22/02/2025 17:59

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]
OP posts:
Cudz · 28/02/2025 08:14

Sending OP all the love and strength. Thoughts are with you, your son and your family. Everything crossed for positive news today xxxxx

TheMorels · 28/02/2025 08:24

So sorry to read your update OP. It’s really shocking that you were fobbed off initially.

I hope you get good news regarding treatment options.

Munchyseeds2 · 28/02/2025 08:27

I hope and 🙏 that they give you some positive news today
Love to you all

Pigsears · 28/02/2025 08:28

💐

A lot to take in.

Try to note down on phone or a book, what the Dr say- so you can remember later. When I write it makes me feel more confident to say 'can you repeat that, I don't think I got that down'. Or 'i wrote this, is that right'. Easier to share this with your partner later today too x

thequeenoftarts · 28/02/2025 08:31

Oh God I am so sorry to hear your update, hard to find words really, wishing you and your son all the best of luck the world has to offer right now. Tell him there are lots of strangers online wishing him a very happy birthday for today and while today is very bittersweet for you as his Mama, we are all hopping for the news to have a good outcome xx

notawittyname1954 · 28/02/2025 08:35

I am so sorry to hear you latest update. Sending you and your son love.

sugarrosepetal · 28/02/2025 08:36

Sending love and positive thoughts. You and your son are so strong. I'm sorry he's so unwell. The doctors are finally taking things seriously so hopefully they'll have everything moving quickly and efficiently now.

butterpuffed · 28/02/2025 08:41

OP , you are brilliant for persevering with insisting your son be seen . I'm sorry to learn of the result . My love to you and your family 💐

Difficultwill · 28/02/2025 08:48

I am so sorry to hear your news. I agree with pp to write things down with the date and time so you can remember each consultation with the doctors. This will keep things straight in your head.
I am sure all on MN are sending you and your son virtual hugs and all the love in the world. Hoping for better news today and I will be thinking of you and your family.

UrsulaBelle · 28/02/2025 08:57

Another stranger touched by your thread, and I hope knowing your lovely boy is in all our thoughts will be of some comfort while you are waiting for more news on treatment.

DeclutteringJane · 28/02/2025 08:58

Good luck today OP I really hope the spine MRI goes well. 💐

Wilfrida1 · 28/02/2025 09:00

My heart goes out to you. One little thing I was told was 'fears are not facts'. When I had a difficult time with something I made that my mantra, and tried very hard to only deal with what was known, not all the maybes and what ifs.

Fears are NOT facts.

anyolddinosaur · 28/02/2025 09:01

When you know what type of cancer he has there is a list of organisations that may provide some support here https://www.childrenwithcancer.org.uk/childhood-cancer-info/coping-with-cancer/help-and-support/

I'm sorry you have to deal with this and i hope there is treatment that can help your son.

MiseryIn · 28/02/2025 09:03

I've been there with my daughter. 3 years on, save for the scars she is back to normal.
It's incredibly scary though and being on the ward is surreal and exhausting.
Try and make notes, take photos of scans and even record conversations as it's so hard to take it what they say.
We were moved to specialist London hospital and they are able to get you places in the Ronald MacDonald house so everyone can be together more. Take turns with dad on the ward etc.
Try to stay positive. Many of these have good outcomes.

Whylurkwhenicanjoinin · 28/02/2025 09:11

Just wanted to add my voice to the many and say I am praying for some positive news soon, sending much love your way OP

Pegsmum · 28/02/2025 09:13

You have both been in my thoughts through the night, sending you strength and love ❤️

NotDarkGothicMama · 28/02/2025 09:15

I'm sorry you're going through this horrific experience OP. I hope today brings answers, clarity and a plan.

Busted2006 · 28/02/2025 09:19

Thinking of you and your little boy OP.

He is in the best hands with an amazing mum who has advocated so hard for him.

caramac04 · 28/02/2025 09:22

Oh OP sending a huge hug and handhold. I hope and pray that a road to treatment and recovery is now beginning.

somethingischasingme · 28/02/2025 09:24

I am so sorry about the news and wish all the best to your son, you and your family. Xx

EdithBond · 28/02/2025 09:26

Wilfrida1 · 28/02/2025 09:00

My heart goes out to you. One little thing I was told was 'fears are not facts'. When I had a difficult time with something I made that my mantra, and tried very hard to only deal with what was known, not all the maybes and what ifs.

Fears are NOT facts.

Morning @YourRubyMaker, I’ve been thinking about you and your son. It’s good he got a little sleep. How is he in himself? Is he chatty and able to watch things on a phone etc.

I’ve been with my DS in hospital for something different, yet v serious. Luckily he was given a side room, as the ward was hellish, due to kids crying etc. It can be so hard for them to rest.

I agree with @Wilfrida1, I know how hard it is, but try to focus on only what you know one step at a time. Make sure you take active notes of what the doctors tell you, as it can be very hard to take in when you haven’t slept and are so stressed. So, it’s easy to forget unfamiliar terminology. By taking a note, it’s easier to think of questions at the time. Bear in mind, doctors will often warn you of the worse case scenario initially, as they don’t want to mislead people. In my DS’s case, the doctors kept disagreeing with each other, which didn’t help but was good in some ways as there were different opinions. Never be shy of asking for a second opinion.

Also, I know it’s so horrible to say (as everyone’s in need) but you have to be pretty forthright in hospital to get your child (and yourself) as comfortable as possible. They’re often so overrun they don’t offer things up. Or things don’t always occur to them. So, if he’ll be there for a few nights, be proactive in asking for things, e.g. let them know it’s his birthday tomorrow and ask if there’s any chance they may be able to move him to a side room for the day or so, so he can enjoy his day as much as possible.

Ask for meal vouchers for yourself and to be referred to patient services for help, e.g. with overnight accommodation for your DP and little one if the hospital is a long way from home. At times like this, you’re entitled to ask for us much help as possible. Try to get as much sleep as you can via naps etc. There’s so much waiting around for scans, doctors to come etc. In our case, I’d hang on for the doctors for hours, without washing or eating, then it was always when I’d popped to the bathroom or canteen that they’d come. So just grab naps when you can.

Sending you strength ❤️❤️

Bleachbum · 28/02/2025 09:27

So sorry for what you are going through.

Dont be afraid to ask if you can record important conversations on your phone. You are dealing with an incredibly stressful situation on no sleep, you will not be able to remember or process the information properly. You can then send the recordings to your DP.

Will be thinking of you today xx

TheStigarette · 28/02/2025 09:29

Thinking of you and your darling son x

WDW · 28/02/2025 09:31

Thinking of you all OP. You’ve done amazingly as a warrior mummy pushing for them to look in to this for your boy. There’s a whole online community wishing him as happy as possible birthday today and we are all praying for some positive news today. I can’t imagine how you feel - try and be sure to look after yourself too.

NoNotTodayThanks · 28/02/2025 09:31

I just wanted to offer you a hand hold and a big hug. I'm so sorry your family are going through this, you'll all be in my thoughts 💐

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