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.

I agree you have been really left holding so much anxiety with ages to wait and that's not good.. They prob should have waited til they were actually able to meet you.. We were lucky that our paed called one morning and asked to come to our house that afternoon to tell us diagnosis (of Tuberous Sclerosis) and asked that dh come home from work if poss..was bit freaked by that.. It was an excruciating wait of a couple of hours and can't imagine that uncertainty going on for very long so I really feel for you..
It is unclear though exactly what they are going to say about your dd.- although it's hard not to fear the worst I know.. Hope the professor is able to talk to you tomorrow and give you some clarification before the weekend. Lots of distraction til then I guess.. and doing nice stuff, treating yourselves very gently til you know what is going on.. Good luck..

I think tomorrow is best I can hope for. At least I have lots of support today (in real life and on here, thanks all) so I think I will get through it.

I agree with the terrible treatment..they also lost our original "urgent" referral so we had to wait 8 months for tests

Fanjo,
I had a similar experience in November last year with my dd - mri results etc.

I am thinking of you and hope that the Paed calls you to ease some of the anxiety. Especially as the delayed tests and huge build up has been much too long. I cant imagine what you are feeling.

Its good that you have lots of support. If I could offer any advice its with regards to the appt.

DH and me were useless, in denial and unprepared for the appt. If I could go back in time I would have asked more questions and written stuff down to get as much info as possible. It was a blur....We were so stressed we were just mute. I do not think either of us spoke during the appt and hour after the appt had lots of questions but no one to ask. We also struggled to remember the detail of what had been said - it was a lot of info.

Its a silly bit of advice really because you do not know what they will tell you until you are there!

I do not want to stress you out more so I hope you do not mind me sharing my own experience.

Thinking of you

Fanjo
The secretary may have to present that voice to everyone. It wouldnt be appropriate for her to be arranging meetings with you in a happy smiley voice as that would portray a "dont give a f*ck " attitude.
I dont have much advice I can give you but am thinking of you. Also, it doesnt help if you are feeling under the weather. Hopefully tomorrow will give you some answers. Have a big cuddle x

Thanks all. My auntie is here and being great, she is going to watch DD later so DH and I can go out, don't feel v hungry but might go for dinner.

Fanjo, I'm sorry you're being kept in so much suspense. I have no cake to offer with the sympathy, since I'm back onto weightwatchers after a few weeks off, but DH has kindly bought some bagels which are rather delicious, dripping with honey...

Arsenic - I take photos and scan the kids' creations, too - usually when they're just at the stage before DS1 colours it all in black or draws car numberplates all over it! I'm not as organised as you with the compilation of said artwork, though!

I have to sit in on doctor/(patient's) relatives meetings, to discuss where the pateint is where they are going, etc.
they always paint the worst possible outcome. there is no optermism(SP) at all this is so hard as the relative, (I've been in that place too)
what I'm trying to say is whatever picture they paintit might not be all that bad.
but I agree they shouldn't leave you hanging on over the weekend

so sorry why do they do this, they should just have made an app instead of putting you to worry hope every things ok?

Hope you are getting a restful evening. Try to sleep, Fanjo x

Just popping back to say I hope the day didn't go too bad and that I was thinking of you.

thanks all. Well,my aunty came round and was critical as usual and not supportive,but then watched dd and dh and i had nice meal and chat.worried about dd though,just has cold but has just been lying around. Can't sleep although shattered.

read this and didn't want to leave unanswered
My Ds1 was tested for angelmans symdrome when he was small, as he presented as a AS child, we didn't know that till after they finally diagnosed Cerebral palsy though. SOmetimes you dont want to know, but hopefully the consaltant will phone you tomorrow.

sunday we have to take critical auntie out (she called me 'awful' and'terrible' today and tells me what to do with dd despite being childless) in return for childcare. Will enjoy sat if DD is better though,she just lay on floor today.

sunday we have to take critical auntie out (she called me 'awful' and'terrible' today and tells me what to do with dd despite being childless) in return for childcare. Will enjoy sat if DD is better though,she just lay on floor today.

oops. Have never known a 3 yr old with so little energy, so maybe it is something metabolic

just realised i said my aunty was being great earlier,she was,for an hour

Well,didn't i type a load of nonsense last night! ↲Managed a whole 3 hours sleep,am a zombie.

I have a friend with a daughter with retts, if it is Retts, I can ask her to contact you if you wish

thanks.i'm still really hoping it isn't but that is kind of you!