Update - this doesn't sound good, does it.

[fanjoforthemammaries7850]

Had a phone call today from consultant's secretary. Straight away I could tell it wasn't great, she had her "bad news" voice on..

Background - DD (3.7) had major regression of speech at 2.10, has always had issues with muscle tone, balance, motor skills.

So she had MRI and genetic testing and EEG/brain stem tests in March as they suspected metabolic illness/Landau Kleffner/atypical Rett syndrome (although she presents with ASD).

Anyway the secretary said both the neurology Dr and the autism professor want to meet us TOGETHER next tuesday.

I asked if I should bring DD, and said if it was something upsetting I didn't want her there..she said "that is what I am wondering, i am trying to ask the professor".

She also said "they have lots of information".

I asked if we could find anything out before Tuesday as we are basically worried sick and she said she would get the Professor to call me tomorrow "to lay the foundations".

It doesn't sound good, does it.

Am a mess.

Would be better if, when we were at the hospital, DH hadn't helpfully pointed out the secret PS the professor had written to the neurologist saying they wanted to test for Rett as well, obviously they didn't want to worry us, and he blithely showed me.

DH getting annoyed with me for being upset...

well, its looking unlikely she will call now. So will have to go whole weekend not knowing what kind of neurological illness my DD has.

Where is human decency.

Don't lose heart. I was phoned by my consultant at 6 pm after my brain scan. I think they have to fit it around clinics.

They will probably call you at the end of their working day now, but I would get your dh to call them on his mobile and see if you missed the call. At least it would put your mind at rest that you haven't missed them.

Really hope they call soon. This is too cruel.

DH won't call them. I don't know who to call and am in too much of a tizzy, tbh. It is cruel.

Fango .. Firstly take a breath... The find one of your letters with the departments number on.. Or the office number if you have it... Your in a state so get dh to call the secretary and tell her what a state your in... And ask her to message the doc to call you asap.

It will be nothing you've done with the phone.. As they would have just tried again.

Virtually hand holding and giving you a big hug

Sorry missed that dh won't call them as I take too long to post.

DH won't call them, he says he doesn't mind waiting until Tuesday, i think he is scared.

and i am in too much of a state, now am falling out with DH too...excellent .

It's too much for both of you.. And it's really not on..

Of course your both scared this is awful.

It would be my bet that your dh is scared and is getting stressed because he can't fix this for you or for him or you dd.
My dh gets just like that.. Ifyou don't get a call by this evening.. I think you two need a drink , a stupid film that you don't have to concentrate on and a hug.

I know, I feel we sound a bit pathetic not phoning but its TOO big to actually phone and ask for potentially horrible news.

I really wanted to know so i was prepared before meeting on Tuesday. Was supposed to be told whether I was to take DD or not , I had said I didn't want to if it would be upsetting. I am working on Monday and can't take phone calls either.

If you need to yell and cry at anyone tonight feel free to call me.. Am a good listener.. And am happy to give you my number via email..

Dd will be in bed at 7.30 and i'm free all evening.

Just an offer x

Thanks that is really nice of you, I fear I am too shy though!!!! I will probably go to bed super early, am shattered, and disappointed.

Its not pathetic at all

Just remember the offer is there.. I need to go and throw food at people now.. But I'll pop on and off here.

thanks, you are so kind.

Thanks, me too. Spose I will just have to forget about it until at least Monday. DH took time off work to be here as well, and I missed an important nursery meeting with head teacher too, on top of everything else.

Now I am thinking maybe its really bad news so the Prof didn't want to ruin our weekend, that's just the pessimist in me though!

True- its significant to ME though, i was 100% promised she would phone today.

I will, thanks.

Am working on Monday so I doubt I will hear then.

Will have to try to find out whether DD needs to be at the appointment though.

Is it possible she might ring after hours? i have heard of consultants visiting families on their way home, that kind of thing.

So sorry you are going through this x

The secretary said she had taken DDs notes upstairs to call in a gap..this was at 12pm. I don't think her hours go on that late on a Friday tbh, the last communication clinic appt is at about 1115.

Well, I don't know. Don't want to give you false hope, it must be hard enough...but I hope she does call, and I hope that when she does, the news isn't bad.