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.

fanjo

I was totally floored when ds was recently dx with Cp longest wait ever from mri to appoinment but for me knowing was better now got my head round it , can tell anyone professionals etc. no my sons not just bloody lazy ,delayed he has cp

Though do get the nerve thing as the neuro gave the cp dx but said hes sure there something else going medical wise and is investigating it .

Hope you get at least a outline call of the Drs today

My DD presents as having CP..but she used to be able to speak well, which means something must be causing the damage to brain now rather than originally at birth, it's scary not knowing what...but suppose we have to know sooner rather than later.

Glad you are coping with your DS's DX, I know that must have been hard.

doing ok now i know why he has never really had much strenth in his limbs etc and now know theres more than one type of cp.

But ds has same sort of issues as yours he has recently started losing some motor skills , posture etc hence continuing investigation.
So huge sympthay on the waiting front forget cake have more wine

DO they think it's epilepsy related? That is an other option with DD...if I had to say what i thought was wrong I'd say CP with epilepsy but I am no doctor..

Thanks, had a bit too much wine last night too.

doh never thought of that , ds has recently been dx with epilepsy after going into status couple of times .

Though think there also looking muscles as they took biopsies/bloods recentley we should get results 2nd June . Wine consumption will increase greatly im sure

It just all sucks, doesn't it.

It really does suck, have no useful input but just wanted to say that I hope for the best for you x

Just needed to post. Please remember that when you do get the DX that they HAVE to give you the worse case synario(cant spell) and it can be very scarry but it is the WORST Case and will not always be that way.

Can you take a friend with you as well as you DH I find that they can remain slightly less emotional and ask questions that you wont always think of untill later .

I don't think I can, my mum would come but she would spend the whole time asking really silly irrelevant questions.

i hope you get to talk to the doctor today !!

THanks..so do I, am going to stay in all day, so will be annoyed if she doesn't call.

secretary just called, sounding more chirpy, saying appt had been arranged on tuesday but the professor is going to call me today "to tell me what is going to be discussed there".....am shaking, wish she just WOULD

they have arranged a special room for a one off clinic with us, which makes me v worried.

have noone here with me when she calls except DD..i am shaking

Can't offer any advice or words of wisdom. Just want to say I'm thinking of you and your DD.

hoping DH is going to come home

Thanks. I think DH is on way home, he always said he'd be here for diagnosis appt and I suppose this is it. Never been so scared in my life..its all the horrendous slow build up.

i wouldnt put my worst enemy through this waiting, seriously. My heart was pounding when i saw the hospital number on caller display unit and it was just the secretary confirming tuesday's appointment.

Not much use advice wise, but can hold hands, listen and pass chocolate cake.

Hope you get some reassurance soon.

THanks. DH is here, working but feel 1000 times better since he walked in door.

Oh Fanjo, I'm hoping that you get a call which helps explain what is going on. I really feel for you and like Star says, we are all here and listening.

I can't believe they called to say they would call....grrrr.....time is passing slloooowlly..

still nothing, now starting to wonder if she WILL call.

Just popping in on my break to see if you've heard anything yet.. And seeyourstill waiting.

I would be tempted tocall and make sure they rememberyourwaiting for a call x