Neuro appt today, feeling stressed about it

[fanjoforthemammaries7850]

DD has an appointment with her two Neurology Professors today, just for a review.

They said on phone they have drawn a blank so I doubt anything bad will be said at the appointment but I feel absolutely sick about going.

I don't know if it's the fear they have missed something bad or the bad memories from the last appointment where we were waiting to hear she had something progressive.

Anyway I am all teary and need a kick up the bum!

wasn't even mr potato head, it was his disembodied arms and hands!

Going to buy a new Hoover today, the excitement! Have goot weekends too!

On a lighter note, DD has gone back to using reams of paper to create great drawings again..and has adopted her old pen grip, wish the neurologist had believed me about this and not got me all worried!!

Hey Fanjo, glad the GP was sympathetic, and glad DD is drawing. Way back when my DD's understanding was less than it was we used to use drawings to communicate with her (potty training springs to mind ) and it was such a great way to get an interaction out of her. Glad your DD draws well, too!
Have a lovely weekend. Hopefully the tablets will kick in and you will start to feel a bit better. I had a crappy stressful day yesterday and am actually glad it's the weekend so I have two days before I have to start shouting at people to sort a particular school situation out!! Time to relax and reflect and NOT worry about the future IYSWIM.

Thanks. I hope you manage to relax over the weekend too!

Have also arranged a meeting with Head Teacher next Friday,to hear how DD is doing at nursery, it's hard when you don't see her all day and don't know what happens. She is a bit more flappy at home, I suspect she is finding nursery a bit busy at the moment, a lot of new kids have started.

Glad you're seeing the head. The school are often good for reassuring us on an overall trend as opposed to 30mins with a Dr.

3 days after starting the meds I found myself laughing hysterically in Pizza Hut while playing a game of Happy Families with the kids. (I mean actually the card game as opposed to going out with the family and pretending we're happy) Anyways I caught sight of my reflection in the window as I was laughing, head thrown back, probably annoying the other diners, and I thougt, 'wow, those babies really work!' Maybe you'll have a similar moment when vacuum shopping?

Glad to hear DD is costing you a fortune in copier paper :)

The Head was surprised when I said the neuro thought DD was losing her drawing ability as she said she has been drawing well!

I am hopeful the meds have already started too, after 2-3 days, I was giggling so much last night! Also woke with racing heart for 2 hours like I'd had a ton of strong coffee though!

Drs are soooo confusing. Although sometimes it works the other way around as in you'll see something and assume it's v bad and they'll dismiss it as entirely insignificant. Argh. Hubby pointed out that when we'd gone to Neuro appts being very concerned they'd always be reassuring, but if we went in feeling happy with how things were going they'd piss on it. Hubby says we should go in as neutral as is possible, or as worried as possible, but never, ever looking as if we are feeling the slightest bit confident. It's like dating as a teenager. Musn't give anything away, act the total opposite to how you feel. Wtf? Imagine dating a Neurologist, what a nightmare!

I think that's where we went wrong, we were feeling quite positive when we went in!!

Fanjo hope you don't mind me posting but read about your dd and the drawing and thought I'd tell you dd who has a moderate to severe autism dx has always been brilliant at drawing.
When she started nursery at nearly four she always had a palmar grip but could still draw better than her nt peers regardless.
When the nursery taught her a more normal grip she couldn't draw. It took a long while before she could use a normal grip and draw to the standard she could with a palmar grip (about 9 months but she would still swap to her preferred grip for 9 months after that)
She would also only draw when she started with a purple pen so if there wasn't a purple pen there to make the first mark then she couldn't draw.
Not trying to imply your dd and my dd share the same dx just letting you know she shared the same behaviour for a while.

thanks.they do sound similar!

Just got the neurologists report from the meeting.

It is grim reading, and ends by saying "they are unable to be entirely reassuring due to her worrying regression".

Anyway, also, it goes on at LENGTH about how DD cannot draw any more as evidence of her losing her hand skills.

DD CAN now draw as she used to as she has gone back to her old grip ( I TOLD the neuro this but she wouldnt listen).

Anyway, should I tell the neurologist she is now drawing?

Not sure whether to just leave it, but don't want her to get an incorrect picture. This report has also gone to the other doctors she will be seeing aargh

The letter DID say to contact them if any changes occur, But I assume they meant BAD ones and not good ones.

have written the letter...she will prob think I am being defensive/in denial but am not really

yes, think you are absolutely right to tell them. could you also include one of her recent drawings? or a copy thereof?

I did, i wrote the letter on the back of one of her drawings, I didnt have many to hand, so its not her best but its an outline drawing of her panda bear with its two round black ears and is amazingly controlled, looks like I drew it (she neuro will prob think that!)

Thanks for answering

well, it's sent, they will probably think I am strange but I don't care!

They won't think you're strange, they'll be relieved and pleased you and dd proved them wrong.

I think so..from the letter I got the impression they were distinctly regretting telling us everything would be fine at the last appointment, since things now looked worse, they were keen to point out they could not be totally reassuring (when they had reassured us last time).

have had a really really difficult day at work, wish I'd let GP sign me off, I wasn't really up to it (very busy with lots of difficult patients).

Fortunately I only work Monday and Tuesday afternoons ...realised today though I couldn't take it if someone shouted at me, which happens quite often when dealing with the public.

Got home to find a missed call from Social Work centre...they told me they had closed our case and were not giving us respite,.....am a bit worried that the GP has called them since my distressed visit last week, would the GP have to inform me if calling SS, does anyone know?

bump as i am worried about this missed call from SS.

I don't think the GP could call anyone without having discussed and agreed it with you first.

Even if she had, would she not be arguing that you need respite - so why would SS then call you to say they weren't giving you respite?

That's hypothetical anyway as there is no way the GP could break patient confidentiality by calling SS and talking about your state of mind/health.

Try not to worry about that at least - you've got enough else on your mind. x

oh, sorry, my post was confusing, they had ALREADY told us a while ago we weren't getting respite...they didn't leave a message yesterday so i don't know why they called me.

Will try not to worry though, thanks!!

Maybe it's a modern day miracle and they've reconsidered the respite??

Have you called them back?