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 you’re going through all of this. My 6 year old had a brain MRI last year and he managed really well. It was around 25 minutes.

I can totally relate as I’m extremely worried about my 9 year old at the moment. The GP has been amazing and has contacted paediatrics because of his abnormal bloods and other worrying symptoms (pin prick type blood bruise) and they turned around today and said to keep an eye to see if any more appear. GP was shocked they didn’t admit him and said they’re so overstretched that they don’t admit as much as GPs would like them to. I’m seeing a private paediatrician tomorrow and I’m worried sick. I can’t sleep either. I hope all will be ok with our boys xx

Hi Op, sorry this is happening. Of course I do not know the whole context of this scenario but I would have hoped your GP has carried out a full neurological assessment/examination on your son. I cannot understand how and why a paediatrician has just scheduled an appointment for June with a new onset of weakness in a limb, red flags are flagging! Your child should ideally been referred to paeds ED for an assessment. Again do not have all the facts but in general weakness / paralysis and unsteady gait is of massive concern and needs immediate attention.

Can you pm me please xx

Once you have the MRI, if there is anything concerning the NHS will usually move at speeds you won't believe. If the MRI if clear you maybe waiting frustrated.
DS has had a load of MRIs unfortunately. There is no metal allowed in the machine, so think about what you are both going to wear. And the machine room is cold, so ask for blankets. I'd second Operation Ouch for a guide to the machine. They are noisy, and make loads of different noises, so prepare for that. Your son may have to have a cannula, depending on the hospital protocols, so again prepare for that. The needles are usually the worse bit for the kids.
I hope you get a clear and quick answer to what's going on. Not knowing is so painful.

@YourRubyMaker it says that private messaging is disabled for me unfortunately :-(

I was just going to ask about how you’ve gone about going private are you paying upfront or through insurance but understand you might not want to talk about that in the thread .

Also good luck today

Honestly hold fire right now.

The MRI is tomorrow. If it's something like a tumour/something that needs quick action that is obvious on MRI then you'll know very very quickly. For us within 20 minutes! When the NHS needs to with kids it can move lightening quick.

If there's something less obvious (not necessarily less serious, but often will be) then you'll be waiting a few days/weeks for a report and then they will decide how urgent an appointment is needed.

If the scan is clear or it's something minor which can wait then it might be June, but you'll still know the results far before then. At that point you can decide whether to go private.

I know how difficult it is to wait, it's agonising, but you are genuinely better off waiting until after he's had the scan to decide whether to pursue private. You'll also know what sort of private specialist you are looking for.

Thank you, very kind of you x

Yes we’ve agreed we will have the scan then Decide what to do

OP, you must be so frightened. I work for the NHS and agree with PP that they can move quickly when they need to if kids are concerned, so hold your nerve until tomorrow when you have more information. It must be so difficult waiting, especially when you have other kids to look after. Thinking of you.

Good luck @YourRubyMaker
Please let us know how your son gets on

Scan done . Was in there for what seemed like ages and was definitely longer than the 30 mins they said it would be , no music or anything for him to have either bless him , they came in mid scan which they didn’t say was happening and just said right he needs an injection and then 5 more mins of scan ? Not sure if this was supposed to be happening or related to something they’ve seen ??! They wernt very helpful tbh and seemed to not know how to deal with kids (went to do injection without even telling him.just lifted his sleeve so I had to tell them !!) but he did so well I was so proud as I found it hard and it made me claustrophobic just being in the room

I’d say it was more like 45 mins

The "injection" would presumably have been a canula to inject contrast dye so that they can see things more clearly, especially things like blood flow.

Glad that he coped with it well. If there is anything worrying you should be told pretty quickly. I was told within 24hours when mine showed cancer (I'm not saying he has cancer but just saying that if there is something serious they can act fast).

Hope you can find something to distract yourself with in the waiting. Thinking of you ❤️

Yes I think that’s what it was but just found it strange they didn’t say they were going to do it beforehand , thanks very much

If thiis neurological deficit is a permenent feature, he would need referral on the day in my opinion. Can you go to A and E? I don't feel you can wait til June if his symptoms are present all the time

Sorry realised I haven't read the full thread! Best wishes

My heart is broken it’s a brain tumor I don’t know what to do awaiting a call hopefully this evening about seeing a Brian specialist ,I don’t know what to do I just want to collapse but I can’t tell him I don’t know what to do

oh I am so sorry you have had bad news. Try to take it moment by moment if you can. Hopefully you can get some more information later on today and having a complex needs child myself I know that knowledge helps you to feel a bit more in control.
There is no right way to feel or react and no need to talk to anyone until you want to.
I am sending you so much love and support and thinking of you and your family x.

Oh love.

The most important thing to hold on to right now is that there are many different kinds and that a brain tumour diagnosis isn't a death sentence.

I've been exactly where your are now and I know how utterly awful it is. How your mind goes to the worst darkest place and your heart is breaking trying to stay positive for him.

I don't know what the road ahead holds and the foreseeable future is going to be rough but try not to make any assumptions into your know precisely what you are dealing with. I'm hoping that it's one of the 'better' ones.

If it's any consolation at all, I'm about to take my BT kid out to ballet. It's physio as much as fun but 3 years ago being able to do something so normal again seemed like a ridiculous hope.

All the hugs in the world. It's time to let the juggernaut that the NHS is when it needs to be (you can see from the speed of results), to carry you along. Make sure you have a bag packed.

If it's a kids neuro ward you go to, don't assume they are all there for the same reason. I found that they deal with a huge range of stuff. When we arrived I was freaked out by how ill some of the kids were, and I assumed that was because of tumours, but actually she was the only one.

My heart goes out to you and your boy.
Do you have family support?

I'm so very sorry that you have had such bad news. I can't even begin to imagine how difficult and heartbreaking this is for you. All I would say is try to take a deep breath and take it hour by hour, day by day, and try not to let your head wonder to worst case scenarios. As hard and as daunting as this may feel, you need to find a way to keep being positive and keep thinking positive. Your boy will need that from you right now more than ever.

Wishing you lots of love going forwards as you navigate this truly awful time in your lives. Sending a hand hold and hugs.

I am so sorry OP. Sending you massive hugs. Hope you have lots of real life support.

Try not to think the worst. My sister had to have a fairly large brain tumour removed 30 years. She has been absolutely fine ever since. The NHS is good in a crisis. Wishing you all the very best of luck.