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.

Thanks..have given up for tonight I suppose. Now going to clean up, DD has been bored stuck in and has been tearing up the place.

Fanjo, just picked up on your thread, you are having an awful time and I'm also sorry that you are going through this. Sending a virtual bottle of something very strong x

Thanks..am absolutely totally exhausted now.

PHEW SHE PHONED.

she said nothing HUGELY worrying, she can't say everything 100% fine as she doesn't have all the investigations with her but as far as she knows there is nothing hugely worrying and DD is still a bit of a mystery. She did say she won't say there is NOTHING showing up, but that there was nothing hugely dreadful. Which is all i wanted to know. We will find out more on Tuesday. She said it's OK to bring DD on Tuesday, i had said if it was something awful I didn't want to bring her, so that is reassuring.

I feel silly for being SO WORKED UP NOW.

And still no answers.

Thank goodness. Frustrating that there are still no answers, but at least there was no really bad news.

I bet she had absolutely no idea how stressed all the waiting made you. Awful as it sounds, you were probably just one on a list of calls she needed to make today and she didn't think about the fact you were waiting for her call. I do think the secretary could have handled it better, as she seems to be the one that gave you the impression there was something to be worried able iyswim.

I agree with Starlight. You need to treat yourself this evening. Wine/chocolate and a feel good movie should do the trick.

I too will be keeping everything crossed for you that whatever is wrong is something that they can take steps to overcome.

i am now trying not to worry because she said there were one or two leads they might follow to do more tests....I am sure they have already tested for all the big nasty stuff though this time!!

What a relief.

No go enjoy your weekend!

glad ypu got your phone call and trust me nearer gets to the 2nd of June I will be just the same

Just checking up on you . .. And I'm really pleased you got the call. Have a relaxing weekend ready for the week ahead.

thanks,you have all been amazing!!!

yes, i cope so calmly

Happy days Fanjo, have a nice weekend x

You cope fine.. You just had a little wobble

and there is nothing like our dc's for getting us to have a little wobble!

I am not one for public wobbling, even online DD is my weak spot though!

LOL Star... we need t-shirts with that on!!!

Fanjo YEAH!! So glad prof rang and SOOOO glad it was good news. I can feel the relieve over t'internet.....and relax Enjoy the weekend and keep us posted on next week.

hey fanjo, glad they finally rang. enjoy your weekend mrs!

i will! DD was so affectionate today,it's great to know i get to keep her and enjoy her!

Having minor wibble - wasn't worried about tomorrow's appt until all my friends told me "try not to worry about Tuesday" so now I am!!!

Just don't want to hear ANY bad results at all now.

I won't go as loopy as Friday though!

Hi, read this thread and wanted to just say good luck from another mum who's sat at the end of the phone just wanting to know how 'bad' the appointment might be, because waiting so long is just too much. Let us know how it goes xx

Me you both fanjo ds2 is on surgeons table tomorrow I want to know but don't want to know iykwim.I been having wobbles all evening and got to be up in 5 hrs

Been chewing friends ear of where luckily is only coming upteatime lol have warned him to be on standby all night

Thanks samiryn.

Hope the day passes quickly for you roundthebend...

Hope that your appointment went well.

Fanjo how did it go?