Neuro appt today, feeling stressed about it

[fanjoforthemammaries7850]

DD has an appointment with her two Neurology Professors today, just for a review.

They said on phone they have drawn a blank so I doubt anything bad will be said at the appointment but I feel absolutely sick about going.

I don't know if it's the fear they have missed something bad or the bad memories from the last appointment where we were waiting to hear she had something progressive.

Anyway I am all teary and need a kick up the bum!

It's the waiting and not knowing that does it. Each of my 3 DSs have a gastro appointment this afternoon. The consultant asked me to book them separately as he finds it 'draining'. Computer was down and when they sent the appts they were back to back! HE (!) finds it draining - I have been building myself up all week.
On the plus side Fanjo, you might get some answers or reassurances by this evening, so you might feel more relaxed and less anxious. but i'm with you on the nervous build up - Big hugs and a mug/glass of what you fancy!

I don't think we will get any answers, we have already been referred to a unit in Glasgow as they don't know what is up with her, am still scared though as any answers might not be very good.

You don't need a kick up the bum, you need a hug.:)

I'm not going to say, don't worry, because you will, but try to remember that things are moving in the right direction. That's what it sounds like anyway.

Do you know now that it's not progressive?

What time is your appointment? Only asking because I would have thought the earlier the better in terms of getting it out the way.

How is your DD doing in general?

Thanks. Am blubbing again, I hope I get it all out of system before appt.

They said they have ruled out "the nasties" and anything progressive, but I think they want to review her just to be sure. Apparently her normal MRI scan rules out anything progressive.

We had been told it WAS though and believed that for months, hardest time of my life.

So I don't really look forward to these appointments.

Appointment is at 2.30, DD finishes nursery at 2, she was up early and usually naps at 2.30 so it could be a nightmare, she will just cry if tired.

DD is OK, she is doing well at nursery and becoming more sociable, she still cannot speak at ALL really though, and is getting more frustrated.

I will keep my fingers crossed for progress. Let us all know how you get on. rant if they're a useless bunch of.. or breathe if you feel more positive. Hugs

They are OK but tend to just mutter between themselves in medical jargon, last time they were discussing whether she had had encephalitis without us noticing, whether she had Rett Syndrome and whether her brain was shrinking, all pretty hard to listen to, they don't realise I understand their terminology.

Just read your last post. Can't believe how bad those months of hell must have been - no wonder you dread what they're going to say.

We were told it was metabolic but we'd have to wait and see how progressive it would be, basically, it wasn't.

She said 2 weeks ago on phone that they had "drawn a blank" so surely they can't hit us with anything else today.

Can't imagine how i will feel on the day of the Glasgow appointment as then we really might get answers..I hate when they have solemn faces and get the tissues ready, then you know you will be hit with something awful.

that's just bad practise on their part. If you're in the room, you're in the conversation.

When's the Glasgow appt?

22nd November, lots of time to worry in advance!!

That's a long old time to wait. I'm hoping that today is positive so you might feel less worried for November. But probably you will worry anyway, because that's what we all do - it's natural - it's because we love our DCs and can't bear the thought of bad news. suzy's right, hugs probably the best medicine. Hugs

Thanks, feeling better a bit now.

I can't begin to imagine how difficult those times would have been. I'm teary just reading it. Not sure how I feel about them saying they have drawn a blank and saying it over the phone. Seems rather unproffesional. They must know that you would be wondering what that means. Is it good or is it bad? You say that she is improving at nursery. That is a huge positive. She wouldn't be improving atall if it were anything really nasty, I wouldn't have thought.

I really do wish you all the luck in the world. My thoughts will be with you at 2:30

:)

She is improving in her sociability and behaviour, not in her speech, sadly.

Thanks for all the support

Good luck with your appointments today too, auntevil.

I'm thinking of taking a bottle of red bull in, just incase the DR feels too drained!!! He ought to try living with them.
My kids problems are far less worrying than neuro issues. Small consolation to you that you made me feel a lot better.

I am glad I did!

well that was hideous, they are now considering rare genetic Rett type conditions and have ruled progressive stuff back in. The prof said 'we are right to be worried' also that she is concerned about her recent lack of drawing. Then they sent us away until December at least. They said they will probably contact international colleagues and will get to the bottom of it,but it will take time. So we just have to suffer I suppose.

how can you say 'you are right to be worried' to a parent then just send them away

So she's mproving in her sociability and behaviour.... Sod the drawing, I would suggest concentrating on that bit and ignoring the prof's pessimism until/unless he proves it's necessary. (Coi: my dad was meant to die in infancy, then survive but be brain damaged, then never learn much,nor work, then never marry.... So he skipped out of special school, served his time in a good trade, worked full time, did an open university diploma, married and had kids and eventually died of something unrelated)

I'm not trying to say they'll find everything is ok, just that crossing unnecessary bridges early doesn't help. My dad did fine but my nan literally ended up in a mental home for several years,and I'm sure it was connected.

how can you say 'you are right to be worried' to a parent then just send them away

They bloody well shouldn't Are they paediatric neurologists?

It's crap Fanjo .... what a nightmare :(

i can see me heading that way,they told us last time it was all fine,it's like they are torturing us

yes,they are both paediatric neurologists.last time they told us they had ruled out anything nasty,now 'we are right to be worried'.it's cruel.