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Original poster

MRI

27 replies

fanjoforthemammaries7850 · 09/03/2010 20:03

Got a phone call today to offer us a cancellation for DDs MRI scan and lumbar puncture under general anaesthetic tomorrow, wasn't prepared as we were told it would be after mid-April. We got appts through for her EEG and brain stem evoked potential tests for 25th March and had been pleased they were doing the non-invasive tests first.

The worst bit will be starving her from 7.30 until the afternoon I think.

Does anyone have any experience? Am pretty stressed about it.

OP posts:
spur · 09/03/2010 20:26

HI There, My dd had an mri in November. she was 23 months. The GA was fine...its a very light one so try not to worry too much.

Its very straightforward and over very quickly.

The drs and nurses will tell you everything when you get there...

I hope it goes well. Its totally normal to be stressed about it...

DD also had her adenoids out in Sept. So I have been through it twice.

Its a long day and will be really emotional. Just make sure you are prepared and take all your stuff and some food. I took toys/books from home as they had nothing at the hospital. (Sorry if I am stating the obvious but we were the only ones with toys on our ward and shared them with the other kids...it helped pass the time)

Hopefully they will not make you wait too long into the afternoon. But they kept us fairly busy so dd did not notice missing lunch!

Thinking of you.

Original poster
fanjoforthemammaries7850 · 09/03/2010 20:35

Thanks, that really helps. Will take lots of stuff.

I suppose I am stressed about the whole thing..terrified what they will find, although I know they won't give a diagnosis tomorrow.

OP posts:
spur · 09/03/2010 20:57

I totally understand. I remember how hard it was. Your imagination goes a bit wild.

Its great that you are getting the MRI. It may be really useful...for us it really was. I am so glad we had it.

As for worrying about the results well try not to - Easier said than done I know. If its straightforward its pretty quick, 1-2 weeks.

It took a long time for us. 4 neuro-radiologists and 4 months later we finally got the written results!!! It was not even bad news either!!!
But thats another story....

Good Luck tomorrow

feelingbetter · 09/03/2010 21:04

You might find this thread useful.

I posted on it a lifetime ago, it seems - and I have forgotten lots of the detail of our experience.

Take a book, DSlite, anything to keep you occupied. Buy yourself a nice cup of coffee and a cake - the waiting is the hardest bit.

Hope it goes well x

meltedmarsbars · 09/03/2010 21:14

Best wishes for tomorrow - hopefully if its a childrens ward there will be a play specialist you can ask for to help with distraction, if needed, for the GA. And ask how long your DD is expected to be down for - I usually get out of the hospital for a bit, just to clear my head, as I know they will call my mobile if they need me. Not everyone likes waiting around on a ward!

I would just say that not all MRI's can tell you everything, they can be inconclusive - please don't get your hopes up too much in case it doesn't answer all your questions. Unlike Spyr's ours didn't really tell us much, but the lumbar punture did. However, hopefully the MRI and lumbar puncture will at least clear up some of your questions.

Try not to let your stess transfer onto your dd - she needs you calm!

Hope it all goes ok.

meltedmarsbars · 09/03/2010 21:15

Arg, spelling!

Spur (sorry spur!)
Stress

Original poster
fanjoforthemammaries7850 · 09/03/2010 21:52

Thanks all!

DH is coming too, which will help a lot.

We will get through it I suppose, as everyone does.

One other question, how were your kids afterwards? Do you think she will be able to go to nursery the next day?

Sounds selfish but it's my birthday and wanted a tiny bit of me time in the morning. Obviously I hope she is OK too, and she loves nursery and wouldn't want to miss it.

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fatzak · 09/03/2010 21:59

Hope it goes well. DS had has 2 MRIs and one with lumbar puncture. First one was when he was just four, and our hospital go in age order, so he was one of the first down to scanning! Now he is six, he was the last to go when he had his last one in Jan.

As spur says, it's a very light GA just to keep them still -i was amazed how quickly they did DS's this last time - think it was only 20 mins.

As long as you have the free patient line TV you'll be fine And really really try not worry about the results - we never find anything out for weeks and weeks, but I always think (from being on here!!) that if there is anything really of concern, then they will be in touch sooner rather than later.

Sorry if a bit whaffly, we have been in hospital with DS for last two days so i am enjoying a MN catch up and a stiff scotch

fatzak · 09/03/2010 22:01

Oh and yes, provided she isn't sick with the GA, would have thought fine for nursery Happy Birthday!

Original poster
fanjoforthemammaries7850 · 09/03/2010 22:12

thanks. Hope she won't be sick, she is sick at the drop of a hat usually though!

OP posts:
spur · 09/03/2010 22:56

Tell the anaesthetist (sorry cant spell it properly) that dd is sick easily...they can do stuff to help - but may not be an issue as it is a light one - ask the question though.

Also should also just mention that the MRI did not give a DX it just ruled out something specific which was a relief and good news for us!
Like I said long story but not worth mentioning now.

Happy bday for tomorrow hope all goes smoothly and dd gets to nursery.

Original poster
fanjoforthemammaries7850 · 10/03/2010 07:10

That seemed the correct spelling to me!

I will tell them that.

She is coughing a little this morning, has been for a couple of weeks but seems well, hope its not a problem.

Is now 7.10 and she isn't supposed to eat after 7.30..but doesnt seem hungry yet, of course.

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Original poster
fanjoforthemammaries7850 · 10/03/2010 07:42

hmm she is proving very hungry and still eating at 7.40.

NOw I have forgotten if she has to have nothing now until the appt at 11 or she is allowed water??!

Normally youd get sent a leaflet but I just spoke to them briefly on phone at work..!

OP posts:
Original poster
fanjoforthemammaries7850 · 10/03/2010 19:56

WEll, it wasn't too bad, although DD cried for AGES afterwards.

She had to fast from 7.30 and scan wasn't until 4.30 so she was getting rather upset by then.

Now just have to wait for results...

They left her notes beside us which said basically they are looking for mitochondriopathy, any storage disease or atypical Rett or Angelman syndromes. So nothing good. Also said if she doesn't have those and EEGs etc are clear they will diagnose her with ASD.

So seems ASD is the best we can hope for, when before it seemed like the end of the world.

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madwomanintheattic · 11/03/2010 00:22

and a little that they left the notes about. i'm guessing that you pretty much knew what the deal was before you read the notes though?

hope she's ok for nursery tomorrow and you manage to get some sleep x

and don't forget they are doing an mri to rule these things out, NOT to find them. weak

Original poster
fanjoforthemammaries7850 · 11/03/2010 07:04

I know, we shouldn't have peeped but it's human nature!

We have been told they DO think it's one of the first two,let's just hope they are wrong. For some reason the Rett syndrome is my biggest fear even though the others are probably just as serious!?

They said she probably wouldn't be able to go to nursery. Will see how she is when she wakes up.

Is first time I have woken up crying on my birthday, and not because I am so old!!

Was cheered up when I came through and found a lovely bottle of perfume and nice cards though.

OP posts:
Original poster
fanjoforthemammaries7850 · 11/03/2010 08:29

Keeping DD off nursery as she is still really tired, the shopping will be put on hold!!

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Original poster
fanjoforthemammaries7850 · 11/03/2010 09:02

..and now I have called the nursery she is absolutely fine and running around, typical!

OP posts:
lingle · 11/03/2010 09:13

Happy Birthday!

thanks for keeping us updated, lots of people are thinking of you.

I hope you can do something enjoyable together this morning.

magso · 11/03/2010 09:19

Glad dd seems fine! Thinking of you too. Happy Birthday!

Original poster
fanjoforthemammaries7850 · 11/03/2010 09:40

Thanks!

Will probably just have a quiet morning then go to the park this afternoon..

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meltedmarsbars · 11/03/2010 10:41

Happy birthday! Glad its all over for the moment.

And mitochondrial diseases are not SO bad! . (My dd2's is a mitochondrial condition.)

Its just a label, and your dd is still the same lovely and loving little girl.

Original poster
fanjoforthemammaries7850 · 11/03/2010 11:11

Yes she is, and I'm sure your DD is lovely too

Thanks.

OP posts:
madwomanintheattic · 11/03/2010 14:28

labels are funny things. i used to think the same about dd2's cp dx. these days it is just one of the myriad of things about her - not a definition. and it's nowhere near as scary as i thought. what it does mean is that you do finally get to know what you are dealing with though - and in an odd way, that does make it less scary. the unknown is petrifying.
she sounds as though she doesn't give two hoots though - hope you both have a lovely day and can put everything to the back of your mind for a bit. x

meltedmarsbars · 11/03/2010 14:51

Lovely post, Madwoman, and so true.