Here we go

[fanjoforthemammaries7850]

DD's rescheduled tertiary referral appt at neurosciences unit in Glasgow is tomorrow morning (had to cancel in November as she was sick)

They are still talking about Rett and such things and I am SCARED.

[daisy5678]

No useful info but just wanted to say good luck xx

[fanjoforthemammaries7850]

Thanks

[5inthebed]

Good luck for tomorrow.

[MedusaIsHavingABadHairDay]

Good luck. I hope it brings non scary answers..:)

[DayShiftDoris]

Good luck x x

[fanjoforthemammaries7850]

Thanks al!

[TheArsenicCupCake]

good luck x

[lisad123isasnuttyasaboxoffrogs]

Hope tomorrow brings you answers and good news too. Thinking of u

[DJAngel]

Good luck tomorrow..

[fanjoforthemammaries7850]

Thanks, hope I sleep!

[superfantastic]

Good luck! Now get to bed! x :)

[borderslass]

Hope all goes well tomorrow.x

[tryingtokeepintune]

Good luck.

[1980Sport]

Good luck!

[signandsmile]

hope today goes well..

[fanjoforthemammaries7850]

thanks! Hardly slept and stressed out.

Just never know how these neuro appointments will go, they can say some scary stuff.

Also hate talking about DD in front of her.

[purplepidjin]

Good luck!!

[glittery]

hope it goes well x

[moosemama]

Good luck, hope it goes well today.

[bigcar]

good luck, hope it went well x

[auntevil]

Hope its going/gone well

[fanjoforthemammaries7850]

Well it was OK.

It took us two hours to get through instead of the usual one, due to horrendous traffic, so we were late.

We saw the neuromuscular specialist. Who thinks she doesn't have a neuromuscular illness but she has to go back for muscle tests in feb, which will be fun -she screamed through this appt.

He doesn't think she has Rett or anything progressive, but thinks she has a small head (apparently we have big heads and hers is average) which could mean a mild structural abnormality in her brain (altho her MRI was normal) which is probably caused by a chromosome defect (we are still waiting for the results of our blood tests to see if her abnormalities are just inherited from us).

He also says an autistic regression is to blame for her loss of speech and mortar skills, in his opinion.

He was very keen to tell us she'd never catch up and be like other kids, and also that they can't help her in any way. I remember reading on here that they are usually ultra pessimistic but it was quite hard to hear.

I asked a million questions about stuff I'd read so he probably thinks I fancy myself as an amateur doctor, but I am glad I asked them.

S it was good in a way to hear his opinion but still felt quite harsh, I don't know why these doctors just trot out things like 'your child's brain is too small' so BLITHELY.

[superfantastic]

Glad it went ok and wasnt to scary. At least if they are pessimistic it makes DCs good progress extra special. :)

Wine time for you Dr Fanjo.

[fanjoforthemammaries7850]

I have to have muscle tests too in case DD and i have myotonic dystrophy (unlikely though) as I was diagnosed with ME years ago and am still quite weak,, forgot that one! Just love having needles stuck in me and electric currents put through them!

[fanjoforthemammaries7850]

Extra wine for me I think!