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 agree with pp, contact the secretary, be nice, but ring them every day until you get a cancellation.

Blimey, what a worry for you. I've had a brain MRI a few years back and the part that I remember the most was how noisy it was! There was music playing but I couldn't really hear it.
I agree with a pp that said to ring the department and ask if he can come in and have a look around beforehand.
I'd also be trying to get the June appointment brought forward because that's a ridiculous wait!
Hope your son has a lovely birthday (despite the scan)

Do you remember how long it was and how you got your results ?

In my experience of MRI’s pretty quick and it wasn’t an accrue situation.

Sorry you are going through this. When my daughter had a brain mri it was about 25mins and they let me sit next to her with my hand on her leg so she felt reassured I was there

Also - if you have the funds you could see if the local nhs neurologist consultant does private - it would prob cost about £250/300 to see them but they would be able to access the mri scan to explain things to you rather than you wait a long time for a follow up

A brain only MRI can be as little as 15 minutes but yes the cage bit around head is a shock the first time.

Is your son an imaginative child? I find the best way to get through them is to pretend I'm an astronaut in a science fiction film and I'm on an exploratory space mission. I close my eyes, tell myself a little story and then fall asleep! They're oddly relaxing as long as you have a 'story' to explain the noises!

I hope you get good news very soon OP 🙏

im So sorry to hear this, my son has had multiple brain mri scans, they take about an hour ish. The results are usually written up for review in about 48 hours, if you don’t have a call by Tuesday evening I’d ring the paediatric department at the hospital to chase. No advice on being in the scanner sorry, though I think headphones are provided by them, my son is 2 so has a general anaesthetic for his

You could go to A&E - do you have a children's A&E near you? I know someone who went with similar worsening symptoms and they scanned them the same day. I hope you can get some answers soon.

I am bloody shocked, even given the state of the NHS, that your appointment isn't until June.

My brain MRI was fairly quick. Maybe 20/30 minutes? I honestly can't remember how long it took for the results to come back. Sorry.
I've just had an X-ray and was told the results might take 2-3 weeks!

I had an mri head just before Xmas. It was only 20minutes and I got the results on the nhs app within a week.

Just some prep that may help. He'll have his head put in a "cage" with a front attachment. Tell him to close his eyes before this goes on and KEEP them closed until the whole thing is over. They ran several mini scans around 4m each and talked to me in between

I also kept my eyes closed the whole time. Also thought of my 'happy place'. Anything to distract him from what's happening really.

I agree with others that it is worth calling the Paediatrics secretary every couple of days for a cancellation for the appointment with the Paediatrician. I'd not be waiting until June. Having said that if the MRI shows anything you'll be seen soon anyway.

Regarding the MRI my DD (7) had a full body MRI including head with the cage. The staff are well-trained to put children at ease as it's imperative they are fairly relaxed for the scan to be completed. Our hospital has a toy MRI scanner where they can go through the process beforehand. I also prepared DD beforehand with videos online. They have me sit in a chair next to the scanner and sometimes can position a mirror so that she can see my face. They are given a buzzer to press for if they feel panicked.

Regarding possible causes, my brother experienced similar weakness and paralysis (but not the same) as a teenager and it turned out to be an autoimmune condition that is treatable and he's a fit and healthy adult leading an entirely normal life.

I've just asked DD about the head apparatus and she says she didn't find it scary as she knew what to expect. She'd probably have been more nervous if I'd told her to keep her eyes closed!

Ds had a brain mri when he was 9yo. He has asd and adhd and was never still so I queried how they were going to manage.

Actually on the day, he lay so still - I think he scratched his nose once, but other than that no movement. I've only seen him so still once since-when he was playing a dead body for a photo shoot. 😂

They said to us bring a cassette/CD to listen to through the headphones. Actually when we arrived their main one wasn't working, but they had plenty of once of their own downloaded that he could listen to. He told me the other day that he doesn't know how James and the Giant Peach ends because the MRI finished.
You can stay with him. I stood at the end of the bed, so he could see me, but not so close he was tempted to start chatting. When they were starting a scan they'd call something like "starting in 20seconds... 10 seconds.... 3... 2...1 still."
It is very noisy-prepare him for that as it can be very off-putting. It wasn't anything like as cramped as I expected (although dh, who did MRI research, assures me that the research ones are much smaller)

They did say that he was one of the best they'd had of his age-especially for a boy, so they're used to wrigglers. They said normally for children of that age they will need to redo at least one due to a movement.

They didn't tell me anything on the day, and the follow up appointment given was about 3 months. They then moved the follow up to about a week's time, which I did panic about. Lovely ENT specialist that I was seeing the day I got the new appointment, I mentioned this, and they (while he was having his hearing check) spoke to his paed and were allowed to confirm that nothing had been spotted and it was simply the paed was going on holiday for the old appointment and had had a cancellation to fill. Phew.

Ds loved reminding his sisters that he could prove he had a "perfect brain" according to the doctor.

This is reassuring thank you so much and yes I will call them

But the actual consultation still isn’t until June.

Definitely do everything you can to prepare him - my DD has had a few - the first was at a similar age, and no one had prepared her for the cage thing, and the technician was not very patient with her when she was panicky. I wish I'd known / they'd helped beforehand.
I could stand at the end of the tube, and have my hand on her leg and she had the periscope thing so she could see me, but found it difficult. I think if she'd been prepared it would have been more bearable.
If you go in with him, you won't be able to go in wearing any metal - you can wear a hospital gown thing if you need to take a bra off etc, but I always made sure I was wearing clothes without metal fastenings to make it easier.
I'm so sorry you're going through this.

Hi OP
I used to work in paediatric oncology (I don’t say this to scare you) and here is what I would advise:
GP or urgent care centre tomorrow. Take him along and say that he’s had weakness and loss of movement on one side of his body, and you want him seen immediately. If you Google ‘be child cancer aware symptoms’ it will come
up with an image. Tell the dr you are worried he is showing red flag symptoms and you want him assessed tomorrow. Not next weekend, not June, you want him seen today.
he isn’t just showing red flag symptoms for oncology btw but also things like stroke. I’ve no idea why they’ve not seen him sooner! If you have trouble ask for the name and GMC number of the dr you are seeing and tell them you will write to complain and hold them responsible if anything is missed. Good luck x

Try and find out the consultants name and who their secretary is, then contact them. I have done this a few times and found them to be extremely helpful.

Wishing you all the best.

That doesn't really mean much. If it's serious they won't even left the hospital after the MRI.

If the MRI is clear they won't have to wait until June for this, though it will be a case of days/weeks, not hours.

Our next appointment was scheduled for end of July, but we had it (via telephone) within a few days of our latest scan results. It's effectively a reserve slot, but if needed it'll be as quick as necessary.

I'm not saying it's a great system, or even a good one, but they won't leave something serious because it's not June yet. The most important thing is to get the scan ASAP, and although I think sooner would be better, by this time next week it'll have been done. If there are any cancellations before great. If there is any deterioration or new symptoms then paediatrics or A&E.

On a practical point, pack 2 bags (one for him, one for you), just in case they are needed. But don't make him aware of this. If immediate admission is needed, then at least you have clothes. Hopefully it won't be needed!

OP been thinking of you and your son - how are you both doing?

Thank you ❤️ I’ve managed to move the mri to Thursday morning after speaking to radiology who were lovely , spoke to the peadatrics and they were honestly useless and said yes it’s urgent but June is the earliest they have despite multiple gp letters and me escalating it to the manager 🙄 I’m still having to parent a 2 year old who I’m having to deal with referrals to other things . 2 jobs etc and stressed as hell but thanks so much for the support and thoughts much appreciated

@YourRubyMaker

you must be going out of your mind with worry op. The absolute worst bit of this whole thing is now. As the worst bit is the not knowing.

Take it from me as a parent of a child with a transplant kidney who was critically ill with kidney failure (amongst other things), that this is the hardest bit. Once you know what you are dealing with, even if it’s something you never imagined would happen to you, you go into a mode. You deal with it. You set out your stall and your instincts kick in. A little cliched I know but true.

Whatever happens you will be ok and he will be ok and you will figure it all out with the help of the wonderful nhs. Sending love ❤️