Nervous...diagnostic appointment tomorrow

[fanjoforthemammaries7850]

Got a phone call this morning to say there had been a cancellation in the Communication Clinic here (DD was referred for an "urgent" appointment in September but they lost her referral.)

This is the clinic where they diagnose. We have been told unofficially that DD has ASD although we have also been told she will have to have blood tests at the communication clinic and maybe another EEG (they also haven't ruled out Landau-Kleffner yet).

I just wondered what to expect. Will they tell us the diagnosis tomorrow? What will they do?

Am stressing a lot about it, even though I thought I had accepted DD's diagnosis. It seems so sudden too, thought I'd have weeks to come to terms with going to the appointment!!

TIA

Thanks. I am really exhausted.

Doesn't help that my auntie just said that there is nothing wrong with DD physically, I just haven't trained her to do things like other children.

oh . sorry you have had such a worrying appointment.

At least they said they are going to write and recommend more support for her at nursery. Just hope she can still go to that nursery as she loves it!!!

Thanks, the forgetting everything sounds good, feel cross-eyed with tiredness just now.

Fanjo,
Lots of hugs.

Brio
x

Fanjo, have an (un-mumsnetty) - it all sucks, doesn't it?

Yes, sadly, all possible answers to this suck. Thanks for all being so nice and supportive.

I am sorry Fanjo. It doesn't have to be terrible news,if for example it is brain damage theres no reason to think it will worsen.

Hugs. And wine.

Thanks. That is probably the best option of a bad bunch, i agree!!

epilepsy cam often be managed, and genetic disorder can be so wide and varied. Truly it may yet not be a disastter.

But tonight there is nothing you can do except care for yourself and your family, and you must, you need to be strong. Anything else can wait for now.

Wow, the professor just called us at home. She said she has spoken to her colleague and they feel that although DD IS presenting with features of ASD they feel its very possible that something else is going on which is affecting her neurology, ie a metabolic disorder.

So she is to have blood and urine tests next week and an MRI (I assume) in next week or two.

So that sort of explains it better, I was feeling mad for "imagining" her ASD symptoms.

It's scary that they are treating it as so urgent though. Don't know if that means it is something very nasty or that they just are trying to make up for taking so damn long to look into it!!

thats great!
They are probably very conscious of the f*ck up with losing your dd's details hence the reason for speeding it along. How are you feeling?

i am feeling a bit confused, and knackered.

have a wee glass of wine and an early night. Wine will help you sleep!
PS I think its great prof called you at home and has been discussing it with colleague. Wheels are def in motion now!

thanks,the wine is chilling! DD is still awake though, she was so tired after appt that she slept for 3 hours earlier and we had to wake her up.

what did they do during your meeting? Did they have wee tests and stuff?

Blimey fanjo what a day for you. I'm glad they are now on the case but it must be overwhelming [understatement]. Wishing you all the best.

thanks, nfah.

Wfg-they played with her a bit but mostly asked me a million questions and thoroughly physically examined her.

That'sbog standard procedure fanj.

I wouldnt worry about speed now; once you're in the system it tends to be quick,its getting there that takes ages.

yes, it's not that quick,has taken them three years to investigate her hypotonia after all!
Speech therapist we saw yesterday was here this morning to video us for Hanen course,she couldn't believe it was the same child,almost,as dd's speech and interaction were so much better than yesterday, it's a mystery.
Looking forward to getting answers now,but half expecting none.

Hmm Fanj,it shouldn't be amystery tbh-kids on the spectrum orwith similar conditions often show wide variations on aday to day basis. Well, don't we all? tiredness, mood, whatever all have an influence. DS3 can go from non verbal stim child to chatty (if incomprehensible) cuddly little man.

yes I am aware of that

But the whole thing IS a mystery, it was a mystery to the neurologist who said she is a "very complex case indeed".

Hopefully we will have some answers soon.

i mean DD goes from seeming almost normal to lurching around and drooling and not really being able to stand up, that's what is strange.

Shall see what metabolic tests show up this week i hope.