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!

Luuk NEVER draws!! How does that fit? In fact Luuk is heading in the same direction as Mariagorwtti's Dad. Wasn't supposed to be here, brain would be 'mush' etc etc and he's doing great. Granted mobility and feeding are still huge issues but he's doing well otherwise.

Try not to concentrate on what she can't do but enjoy what she can and enjoy every last minute having fun. Docs don't know it all and there may be something in what they say. However they may have it wrong................
((((((((((((((((((((hugs)))))))))))))))))))))

Hope you get ome answers soon, am not sure what you bacground is, but sounds awful not knowing.

background is..dd used to have thousands of clear words,lost her speech and developed asd traits and motor problems at 2.5,we were told it was metabolic but her tests and mri scan were clear.she has always loved to draw and drawn loads but recently can't, neuros are worried again and again talking about progressive conditions. It sucks! Used to think we had a gifted child,now she can't speak and has obvious issues. Thanks all for caring

for you, fanjo. Nothing I can say xx

on a brighter note, DD has said a few words today,understood more than usual and was walking up an enormous slide the wrong way and making it to top,so maybe there is hope

:)

Fanjo,
I have no concept of what you are going through but am sending very unmumsnetty hugs, large cup of tea and slice of cake your way (actually two slices, one for you and one for DD).
Brio
xx

I have nothing particularly intelligent or helpful to say, but will post anyway to show I read and care xxx glad you had a good day with her language wise.

fanjo, nothing helpful to say but thinking of you and your DD

Thanks, you are all lovely

Thats good today fanjo :)

Focus on the good days and good signs - walking up a slide takes great skill.

it does...she couldn't manage the ladder so got up the other way, she is a determined wee thing.

Determination will out. That's another real positive to focus on. x

Determination is half the battle, I think. DD1 couldn't pour a drink with a jug, so dipped her cup in the jug

dd can't ask for milk so brings the bottle and her cup to me, a huge 2l bottle

Bless her - we would have no milk left! DD1 is so wobbly that she would spill it and bring us an empty bottle

Can she sign, Fanjo?

thanks starlight. I know you are all lovely and supportive, i was just having a flaky moment this morning

she can't sign due to her motor issues,can barely wave or point

Fanjo That is hard. DD1 is very wobbly, and her fingers curl and she has weak hands. Her pointing is very vague and generally quite 'whole hand', but she does manage to sign in a haphazard DD1 way.

Could she use PECs cards?

...or visual aids, like a visual timetable

Sorry, that last one was naughty, and you probably aren't in a joking mood.

she tried pecs but couldn't pick up the cards.

no,it's not too blunt, it is pretty horrible. I cope by just being in denial tbh