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Here are some suggested organisations that offer expert advice on SN.

Here we go

(37 Posts)
fanjoforthemammaries7850 Mon 10-Jan-11 22:20:14

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. sad

daisy5678 Mon 10-Jan-11 22:27:11

No useful info but just wanted to say good luck xx

fanjoforthemammaries7850 Mon 10-Jan-11 22:27:47

Thanks smile

5inthebed Mon 10-Jan-11 22:28:53

Good luck for tomorrow.

MedusaIsHavingABadHairDay Mon 10-Jan-11 22:32:47

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

DayShiftDoris Mon 10-Jan-11 22:34:23

Good luck x x

fanjoforthemammaries7850 Mon 10-Jan-11 23:01:50

Thanks al!

TheArsenicCupCake Mon 10-Jan-11 23:04:22

good luck x

lisad123isasnuttyasaboxoffrogs Mon 10-Jan-11 23:05:09

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

DJAngel Mon 10-Jan-11 23:06:13

Good luck tomorrow..

fanjoforthemammaries7850 Mon 10-Jan-11 23:09:35

Thanks, hope I sleep!

superfantastic Mon 10-Jan-11 23:11:09

Good luck! Now get to bed! x

borderslass Mon 10-Jan-11 23:56:45

Hope all goes well tomorrow.x

tryingtokeepintune Tue 11-Jan-11 00:54:36

Good luck.

1980Sport Tue 11-Jan-11 02:24:10

Good luck!

signandsmile Tue 11-Jan-11 06:41:32

hope today goes well..

fanjoforthemammaries7850 Tue 11-Jan-11 07:29:52

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. sad

purplepidjin Tue 11-Jan-11 07:59:04

Good luck!!

glittery Tue 11-Jan-11 10:38:24

hope it goes well x

moosemama Tue 11-Jan-11 12:48:10

Good luck, hope it goes well today.

bigcar Tue 11-Jan-11 13:02:05

good luck, hope it went well x

auntevil Tue 11-Jan-11 14:13:23

Hope its going/gone well smile

fanjoforthemammaries7850 Tue 11-Jan-11 17:30:59

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.

sad

superfantastic Tue 11-Jan-11 17:41:10

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. grin

fanjoforthemammaries7850 Tue 11-Jan-11 17:49:55

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! hmm

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