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SN children

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Original poster

MRI on monday, last minute nerves :(

25 replies

misscutandstick · 23/07/2009 20:04

I wanted DS5 to have an MRI, to see extent of possible brain damage. Paed seems to think he will definately have some sort of damage as he has learning difficulties.

DS5 also has (as im sure you are all aware!) GDD, and is delayed by 18mths+, hes 3.2yrs. Hes autistic too.

But what if they find quite a lot of damage? I know it doesnt change who he is right now, and i love him to bits - hes brill!!!

I dont worry about tumor or anything. Or even having something wierd like half a brain or something.

BUT what if they find something that means he is unlikely to ever grow up? hes wonderful right now, but an 18y/o whos still 18mths?

The reasonable bit of me says he is physically growing (if only ever so slowly) and he is, I think, maturing a bit... actually hes been around 12-18mth for an awful long time. or perhaps thats just how i perceive it to be.

I know NO-ONE can tell me its going to be OK. After all it might not be . but equally it might be. I suppose thats why i wanted it in the first place.

OOOOOOHHH i dont know. suppose it really is last minute nerves. just want to get that off my chest, thanks for reading. XXX

OP posts:

mumgoingcrazy · 23/07/2009 20:22

Don't worry is my only advice. We went through this 3 weeks ago, DD2 is (just) 2, has GDD and paed, geneticist and OT all expected brain damage to appear on the scan. It didn't! She had delayed myelination and a slightly unusual looking brain which I now know is nothing to worry about. It is an agonising wait, probably the worst 3 weeks I've had in a long time but it's now done and everyone can stop speculating now.

My point is really, that we had 3 professionals all telling us brain damage was highly likely to show up and it didn't.

I hope it goes well on Monday, you can breath a sigh of relief once it's done.

Original poster

misscutandstick · 23/07/2009 20:28

thanks MUM, glad to hear your DD is well. Its also good to hear that it isnt always bad news.

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lou031205 · 23/07/2009 20:31

It has helped us to know that there is definitely 'something' in DD's brain to explain her issues. It doesn't make her prognosis any clearer, for now, but we know that her issues are nothing to do with anything we did or didn't do. Small comfort.

Original poster

misscutandstick · 23/07/2009 20:45

LOU, the paed said it was UNLIKELY to give ANY prognosis at all, more of a 'lets see whats going on' type thing, but added "id be very surprised if there wasnt any damage".

Lou, can i ask what they found? dont worry, you wont be adding fuel to fire

I do keep wondering if:
A)its the way hes made and he was always meant to be the way he is.
B) he had a pre-natal stroke
C) he sustained damage during labour.

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lou031205 · 23/07/2009 20:52

Of course.

DD1 has "subtle but extensive cortical dysplasia".

What that means is that DD's brain surface didn't fold correctly as she developed in the womb. Neurones didn't migrate to the right places.

lou031205 · 23/07/2009 20:54

I wondered if the time she flipped out of my arms at 17 months during a tantrum & hit her head on her cot had damaged her. It was a real source of guilt. I felt I should have stopped it. It was a great relief to know it wasn't.

wrinklytum · 23/07/2009 21:06

Hi Miss Cut and stick,

dd had an MRI and it did confirm her dx,she had lissencephaly with sub cortical bnd heterotopia,again like Lous LO it meant her brain did not develop in a ususal manner,and is smooth instead of "Crinkly".

I guess I knew things were not going to be right and found the whole thing exhausting and v emotional,you are normal to be having these concerns.

The docs can only say that dd "Will require lifelong care" and will remain delayed,in her case.I guess I sort of expectedit but it ws still a shock,the confirmaton of iut all.

The thing is NO ONE can really predict how a child with learning delay will ever progress,and though I know dd will never be normal she is progressing in her own way IYKWIM,and is full of smiles and happiness,so far

Thinking of you xxx

Original poster

misscutandstick · 23/07/2009 22:36

many thanks for all your replies, it does help to know what a wide range of all or nothing it could be! It is a comfort to know that whatever is or is not found, i know i can rely on everyone here for support. thanks again.XXX

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Phoenix4725 · 24/07/2009 06:27

misscutandstick

our ds seem to be following the same path still.Ds is due to have his mri scan to and the words pre natal stroke keep cropping up

ds is still around the 2 year level at 4 to ,though found Bibic assement helpfull see exactly where ds is rather than the paeds devlopmental check done in 20 mins including physical

Original poster

misscutandstick · 26/07/2009 13:56

good luck for the MRI phoenix, whens the appt?

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Phoenix4725 · 26/07/2009 17:27

week tomorrow but we seeing neurologist tomorrow , good luck tomorrow wonder how fast we find out

fatzak · 26/07/2009 19:40

Good luck misscutandstick and Phoenix.

We've moved on from MRI now and DS is going down to St Thomas' for a PET scan on Tuesday to try to work out where his seizures are coming from. Like you misscutandstick, i'm just pertrified that they are going to find something else. When he had his MRI they picked up on a small area which was an indication of lack of oxygen at some point but they couldn't tell from where but after ages they decided it was incidental to his seizures. I just keep imagining that after the PET they will decide that it's something else - you know what it's like and just get very wound up about tumours etc...

Breathe ... wine..breathe.. wine ......

trace2 · 26/07/2009 20:22

misscutandstick and Phoenix. good luck!!!

fatzak have been wonding if your ds had it yet, good look on tuseday (hugs) to you all!!!

fatzak · 27/07/2009 08:19

Thanks Trace. Shall we meet up soon? We are on hols 10th -24th August. Maybe somepoint during week of 3rd August if you around?

trace2 · 27/07/2009 08:51

yes we should just give us a nudge!!

hijack over sorry

Original poster

misscutandstick · 27/07/2009 09:09

fatzak, good luck to you too

no worries trace!

thanks all! setting off in an hour or so .

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Woooozle100 · 27/07/2009 10:01

hope it goes well for you all and you get some answers

mumgoingcrazy · 27/07/2009 13:51

Good luck, hope it goes well! x

FioFio · 27/07/2009 14:41

This reply has been deleted

Message withdrawn

Phoenix4725 · 27/07/2009 17:30

how did it go misscutnadstick?

wrinklytum · 27/07/2009 19:58

Hope things went ok xxx

Original poster

misscutandstick · 27/07/2009 21:23

back home and knackered!

It took an hour and half just for someone to take his name! Got there at 12noon, didnt go down to machine till 3.45pm!

And yet again, if only i got a quid for each comment of "ooh hes busy isnt he?" then i would be rich and would have everything private!

He didnt put up much of a fight to be put under - but he had been up since 5am. came back up at 5pm full of screaming and bandages (he kept trying to rip out the canula) and it took an hour of calming before he would drink anything. .

But hes come round and is much happier and his usual chirpy self.

but the deed is now done, and hopefully the results will be clear whatever they are, as we are NOT going back!

many thanks again for your replies - it really does make a huge difference! XXX

Good luck for monday, phoenix

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Phoenix4725 · 28/07/2009 07:30

any idea when you will get the results?.

The neuro we saw yesterday was pretty blunt with what hes expecting to see was same person we saw at Bibic so was not to was told expecting to see some genralised damage and localised damage to the speech area .There also going to be looking at his spine with queary spina bifda in mind

cyberseraphim · 28/07/2009 09:46

"And yet again, if only i got a quid for each comment of "ooh hes busy isnt he?" then i would be rich and would have everything private!"

'If I had a penny for every time I heard that I could afford to go private !" What a fantastic line. You should copyright it !

Hope you get news soon

Original poster

misscutandstick · 06/08/2009 22:21

wanted to let Phoenix know:

The Paed left a message on answer machine today saying he had got 'some' results back, and could i get in touch to discuss them. He then rambled on (hes not good on phones, cant shut him up in person!) about the radiologist saying that he wants the Paed to read 'mums notes' (presumably birth notes) before drawing any conclusions...

The tone in the paeds voice didnt sound like he was convinced it was necessary.

DS5 was a homebirth, which went very smoothly until last minute. He only got stuck for a couple of contractions, tiny trickle of blood then she unhooked him and he was out (4hrs from waters to birth). BUT not sure if the hospital would have the notes? surely somebody should have some?

So, analytically scrutinising every word (as we do ), i was wondering if the radiologist was suggesting damage was caused at birth - or is it usual to always look at birthnotes? But the paed (I think) has already made his mind up about the results and doesnt think its birth related.

Incidentally, Im absolutely NOT looking to blame anyone, i truly believe that i actually received more intensive care than i would have done in hospital, and if anything has happened during the birth then it was very likely that it was by a greatly reduced amount than he would have received in hospital.

Just like everyone im only looking for answers.

Im going to ring him first thing, i assume he will call me in to chat face-to-face, usually within either the same day or at most a couple of days later. bit nervous, but really want to know.

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