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

Fanjo, I dont have any advice for you other than good luck and let me know how it goes.
We have still to go through the diagnosis process so will be keen to hear your feedback.

Fanjo, its hard to know what to expect as different areas of the country seem to do things differently! Best wishes for tomorrow

Thanks,

I suppose I have to look at it as painful but has to be done, like a lot of things seem to be these days!!

Will report back afterwards

no advice, but good luck with the appointment.

Thanks!

Not feeling too nervous!

Which IME usually means it will be awful and much worse than I thought!

Thanks.

I think she IS picking up on it as she has been acting very strangely, shouting same things over and over and hitting herself on head etc, which she never usually does.

Means I am not exactly expecting them not to diagnose ASD I suppose!

She is 3.

I don't think there is any way they will say high functioning, am prepared for moderate.

I can see why people would grab at the chance of using "high functioning" but also feel the need to get her suitable support - ie more than 5 hours a week of support at nursery (am having to take change of clothes every day as they cant control her and keep her out of water etc).

Good luck Fanjo. I have been reading a lot about Landau Kleffner as many of the traits fit DS. He is in hopsital at the moment as his seizures have gone haywire and his speech has almost completely gone. I would presume that his EEG didn't show LK activity, but knowing the useless lot we are dealing with at the moment, who knows. I suspect we may end with some kind of autism diagnosis very soon.

It's so hard isn't it preparing yourself for the news. I can't believe that when DS was about to start school three years ago I wondered if he would be bored as he was so able and way ahead, now i am wondering if he will ever return to mainstream

Starlight...well, I'd say she IS functioning but its clear she has ASD to me, it's confusing.

She is unusual though, when we did the GARS-2 test at 2.3 she came out as borderline for even HAVING ASD, then she lost all her speech at 2.9, which is very late, and it has come back.

All her difficulties are on the speech and language side.

Fatzak..you have had a terrible time recently. DD had a sleep deprived EEG and hers didnt show LK activity but she didnt go into a deep enough sleep apparently. She doesn't have any visible serious though.

It is hard when you think they are very able and have to change your whole expectations, DD's speech was AMAZING at 2, and people went on about how eloquent she was, I thought she was very gifted, then it just went overnight and she sounds like she has severe LDs.

Oops, I meant seizures not serious. DD doesn't sleep at all well and i am exhausted beyond belief.

I am starting to think we won't get a diagnosis today at all tbh. But it will be good to talk to someone about it.

Will be thinking of you Fanjo

thanks, will update this afternoon, about to leave.

good luck xx

good luck fanjo x

hope it goes well

Well, it didn't go well, but not for the reasons I thought it wouldn't.

The neurologist thinks DD has got a problem with her extra-pyramidal system (the part of brain which controls movement) which comes on sporadically and affects her movement and speech (she has physical problems and had a late regression).

So this could be a genetic thing, a metabolic disorder, epilepsy related or brain damage from birth.

She does have the ASD traits but this could be down to her communication and movement difficulties causing her to withdraw.

I have always felt DD might have something else going on but its still a shock.

Managed to summon up the courage to ask if it could be a brain tumour and she said unlikely. She wouldn't/couldn't say it wasnt something that could degenerate with time though.

So now wondering what the future holds for my DD.

Fanjo, so sorry that you got such distressing news about your DD today. It must be such a shock, grating yourself up for one dx and then being told something different.

DId they say if/what tests they can do for your DD?

oh sorry to hear that Fanjo i hope you get some answers soon as to what is causing this and what can be done next (((((big hugs)))))

Fanjo, how horrible for you to have such an uncertain prognosis.. are they seeing you again?

Thanks.

We are waiting for the tests, she will probably be going into hospital to have them all done, she will have an MRI, blood tests and possibly a video EEG, don't know what else yet.

Should be fairly soon I think.

Now having to tell all the family and they are all getting upset.

Aw fanjo, have a big cuddle. Try and stay positive(hard I know).

Thanks