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!

I just wish we could buy DD pens as a treat and watch her go through reams of paper like she used to do.

Fanjo - I have no experience to comment on any of this, but just want to let you know someone else is up and reading this . Even with our not at all serious situation compared to what you are going through I know how hard it is waiting for appointments and how the thoughts and scenarios can go round and round in my head. And that feeling after when there always seems to be something else thrown into the mix.
There should be a sympathy smiley - sending one anyway.

thanks

back to the rollercoaster, she had paper and pens last night, when I came back through she had drawn quite a few pictures like the old days.

Then she had them this morning and was once again flapping at the paper, trying to make marks, and seeking different types of pen and paper and getting upset, she used to use any pen on any paper and always draw properly.

Don't know why she could last night though.

It's so upsetting to see I might just get rid of all pens and paper, can't take it.

no-one even needs to answer, I am sort of using the thread just to get my feelings out I suppose.

sending you hugs, fanjo

(formally wonderland)

Thought i'd just check in on your thread.

When you took her to her appointment last week had she been drawing again atall by that point or was last night a first?

I know it's gone back again this morning, but it has to be reassuring that the capability is still there.

she has not been drawing the same for a while now, but I thought it was nothing major.

It's super worrying, was already almost tearful at nursery today then DD was tryingto go to sleep there as she is so tired and the Head told me her 1:1 is off tomorrow so she might not be able to go.

Causing me a childcare hassle, my mum has been sporadically unwell (she looks after DD 1 afternoon a week) so I hope she can come earlier tomorrow.

Then my auntie called who looks after her the other afternoon I work (today) saying she has sciatica, so now I am not sure she is fit to look after DD.

have no holidays left so have to go into work today as normal and pretend I am fine.

i am not fine, not sure I can cope with all this any more.

my mum has also been getting forgetful, my auntie is getting thin with no explanation and we had to visit my alcoholic diabetic uncle yesterday.

It's all too much.

put it this way, i am worried that my mum has dementia and my auntie has cancer, which is bad enough but they also provide childcare for me when I work, which is important to me, but I might have to leave, and my uncle is clearly going to kill himself, on top of all the worries about DD.
Can't ever have a week when I know I can just go to work and DD will be OK, and now the nursery are messing me about.

Oh dear. Anybody going through half of this would be feeling as if they couldn't cope.

It's quite last minute for her 1:1 to say she's off tomorrow. That's really not fair on you. Is there really nobody else you could ask to look after her. Also, i'm assuming your work knows about your situation and would hopefully understand that there's nothing you can do. You shouldn't have to worry about the fact you don't have any holiday left to take. They should be understanding!!

Fanjo, no words really. That is so sad and stressful. Too much for one person alone to bear.

The drawing thing. Could she have some sort of food intolerance? I don't know. Is there anything she could be eating/drinking that is 'poisoning' her, which would account for the variability? Something normal and everyday that we wouldn't naturally think of?

I don't know why that sprung to mind, just that it is odd that last night she could do it and today she can't

Sorry your having such a tough time Fanjo...must be something in the air lately. :( Vent on here. Cant you take additional leave from work...parental rights??...Flexible working etc?..Look on directgov. Any groups/services locally you could contact for childcare?...It sounds like you need a break though.

At least theres some hope as DD did manage to draw again...even though it was temporary, she may get it back again? :)

I know Im clutching at straws but I wish I could help you...with something other than virtual hugs and tea!

She has severe food allergies...to eggs, fish, nuts and now lentils, so that could come into it lougle.

I was so happy last night when i saw the drawings, then rock bottom again today.

Work have already been good and flexible and can't really ask for more time as they are then short-staffed.

i think I will probably have to leave work, as its too stressful now, but i don't want to.

SS wouldn't give me any respite as they said I get support from my mum and auntie

I will manage at work, have worked through all my mum's cancer appointments and test results and kept a brave face on. (yes, she has had cancer too).

They still think epilepsy is a possibility so maybe that could account for the variability. I just don't know.

anyway I'd better stop blubbing as nursery are going to call to tell me if DD can go tomorrow.

phew, nursery called to say they have cover. So that's ONE thing off my worry list.

am now worried as I suspect DD has slight earache so I hope she is OK tomorrow after they went to all this trouble, still I suppose its not my problem if she is off.

Good news!!:)

..SS can now see you dont have support from your Mum and Auntie due to ill health....call them!!!....and call in extra support for the hospital appointments etc...other family? Macmillan Nurse???

At least if its food allergies or epilepsy its not progressive. Keep positive...she did manage to draw again. :)

Glad nursery rang. :)

I didn't tell them my mum and auntie had ill health as I was worried they say they weren't fit to look after DD and make it a child protection issue.

I will call them if things don't look up though. Just DD loves her granny and great auntie and wouldnt like being given to a stranger while I am at work. Would rather leave work I think.

hey Fanjo,
just a wee note to say I am thinking of you. Don't have much to add but hope you will keep posting

i will although I am getting a little embarrassed at my outpourings

nah don't be embarrassed.

No, you have every right to let your feelings out. Never be embarrassed. It can be very theraputic.