Childs MRI

[Humanswarm]

Hello, could anyone tell me, how long after MRI you had your child's results? I know it may vary from health board to health board, but we are in Wales.
MRI done on Friday, for possible brain tumour. Appointment made for next Monday. Which is apparently very fast at the moment, but tormenting myself with what this means. Another week is a long wait..

@Somuchgoo thanks so much. We are packed, we packed comfies last week. And they have remained in the car. He currently remains on home leave. We have also packed his favourite things to do, namely lego magazines and pens and paper.
We spent some time on the ward last week and the play specialist was great. He came home with bags of lego.
Practical ideas are very welcome.

We are exhausted due to lack of sleep currently. He just won't close his eyes due to the pain. He drifts off eventually but something wakes him, and he starts an episode, and the cycle continues. Categorically no napping in the day, he refuses. I'm not sure how he still functions at all.

I'm less inclined to think that it's something malignant now. As I think we'd have heard back. But something is terribly wrong. Everyday I wake thinking, today it all might go away. But it doesn't.

Omg - prescriptions!

your gp can send any repeat prescriptions to pharmacies near the hospital but probably not the hospital pharmacy itself. My husband ended up posting my hrt to the hospital :). Took a double dose :)

Hi OP well I hope my story will give you another smile.

after that week (the equivalent of the one you’re going through now and for me the most traumatic part) I got a call from my son (18) saying “I’m going in for an operation”. I said “fine I’ll be there when you wake up” grabbed childhood teddy, jumped in clapped-out car. Had a massive sense of relief and activity at that point.

Neighbour had blocked me in. Ran to neighbour who did not rise to the occasion and told me to calm down and “be polite”. All very surreal placating him…. A bit like losing your toddler on the playground and not understanding why everyone isn’t looking.

drove to our city and picked up dh who was useless. Said “stop fucking Googling” (he had asked ds what the diagnosis was and got a garbled response). Decided to abandon dh - pulled off motorway and dropped him at train station near M1.

got as far as Watford Gap, realised I should be on A1 not M1. Turned on satnav. Drove down country roads through Northamptonshire. Doubting the satnav, pulled into a lay-by to check. Car wouldn’t start.

shall I go on? :)

@EqualFranknessWithYourLadyship well, I fear you have to at this point, I'm invested now!
I actually laughed out loud at dropping your dh off though! I'll definitely bear that one in mind!

…got phone out. On 5%. Crap car of course had no charger. Call DH who has made it home, is keeping the news from ds2 and is convinced I’ve done that thing where you’ve locked the steering wheel and you have to jiggle it. Try to explain about the now 4% but it doesn’t sink in. Say “Call me a taxi”. Hang up. Call my brother who is out with friends about an hour away and say “I need you to come and get me. I’m in a lay-by in Northamptonshire and I have to get to Addenbrookes. He’s worried says “where in Northamptonshire?”. Hang up and spend another percent googling my location and writing on paper. Text dh name of nearest village. Phone then dies and there I am on this country road.

we need to keep you invested till Monday OP so I’ll tell you what happened next tomorrow if you check in.

@EqualFranknessWithYourLadyship thanks so much! What a drama you had so far!
We're snowed in today. All schools closed. Older dcs at home too. I usually love a snow day. Instead my head is running through all the potential nightmare scenarios. What if he gets worse and we can't get out? What if we can't make his appointment in Monday ( I know, I've checked the forecast and it should be okay by then, but still..catastrophising!)...

it’s prepping not catastrophising .

Checking in on you OP

Good luck for tomorrow. x

@BlackSwan @EqualFranknessWithYourLadyship thanks so much both of you for thinking of us. We've had a very quiet weekend. He's been very very tired, pale and just not himself so I am so relieved we are going to get some answers tomorrow. I hope. I just don't know what they'll look like.
Very relieved that the snow had disappeared so getting to hospital isn't an issue now. We have bags packed. Meals prepped. I think, practically speaking we are ready. I can't really remember what it's like not to feel like I monitoring him, all the time. I don't think he picks up on it, I don't want to add to his anxieties. But every little thing he does, frowns when his head hurts, lies down for longer than usual, says he has pain..I don't know, I feel like I am permanently on high alert. I just want him back to normal.

Thinking of you and hope it all is well xx

Hugs to you all for tomorrow, I hope you get some answers 💐

Good luck x

Hi all, so yesterday was a day of two halves. No MRI results, when we met with the Paediatric Consultant, she was under the impression we hadn't even bad an MRI. She showed us in the system that we had arrived at the MRI suite, but that was all. She I'm fairness, when down to MRI to try to chase results but found nothing, so assume they haven't been read. We believe this a good thing, as PPs have said, anything too ominous would have been flagged. She also said, she believed he may be suffering from AWIS as a PP had said. Alice In Wonderland Syndrome. Which essentially can't be treated until they find the reason behind it, which again, they need MRI results for, they also took bloods yesterday, which meant my ds was pinned down to the bed hysterical, in order to get bloods which was traumatic for us all! They're looking for signs of infection and also checking his thyroid amongst lots if other things. He now awaits an EEG. As its possible he's having constant migraines, which is causing the AWIS. So, whilst there's relief, we're also still in limbo. She refused to give any pain medication or anything to help him sleep until we get the MRI results too. One day at a time.
Thanks all for your well wishes! We appreciate them so much

ok.
so more torture but a dr who listened.
what will you do now? Research AIWS?
is it worth contacting PALS about the lost results?

Really frustrating that the MRI results weren't back. Any diagnosis is worrying, but on balance an AIWS diagnosis, if that's what it is, sounds like something which hopefully can be managed and fingers crossed may be temporary.

It's good he's having all the tests done - I'm sure the EEG will not be traumatic like the blood test. x

What a nightmare when you were hoping the appointment would bring answers. Did the doctor say what they were going to do to track down the MRI pictures?

@BlackSwan @Cuckfancer @EqualFranknessWithYourLadyship thanks guys! So, yeah the plan is the hospital were chasing the MRI reading, haven't heard anything yet, but were promised by the end of the week. We shall see.
I have been researching a lot this week, and it's seems potentially, he may grow out of it, or equally it may be something he has to live with. 🤔
My concern currently is his pain, and the fact he doesn't just suffer occasional episodes, but, sees people as having tiny head 24/7. I had a chat with the Head at his school, ( he's still home currently), and she wanted MRI and other test results back before we think of a plan for a phased return to class. I can't find any guidance at all. I can't see how he, at this stage, could tolerate going into a class environment of 25 children and seeing them all as distorted as he would. But, in fairness, school have been fab, very helpful and supportive .
We'll continue one day at a time, but honestly, some sleep would be great! He's still struggling to go down at night and is waking multiple times over night. Feels like I am back in the newborn stage..

poor little boy I’m glad he has you.

When my DS was diagnosed with a brain tumour we received the results the next day

@familyissues12345 I'm so sorry to hear your ds went through that. I hope all is okay now? I think we have ruled that out now, thank goodness. We'd just really like some answers, a possible treatment plan or some description so we can move forward. Seeing him in pain, and so scared is horrible.

How is your DS, @Humanswarm ? Hope you have some answers x

What was your child’s symptoms? My 16 month old is displaying quite a few and theyre starting to all add up now and I’m quite concerned.

Poor balance, morning vomiting (not every morning but quite a few), she’s got bad eyes and wears glasses for a squint and has started to hold her head and clench up her face. X

What was your child’s symptoms? My 16 month old is displaying quite a few and theyre starting to all add up now and I’m quite concerned.

Poor balance, morning vomiting (not every morning but quite a few), she’s got bad eyes and wears glasses for a squint and has started to hold her head and clench up her face. X

Any update @Humanswarm - I often think of you and your LO x