To be absolutely terrified of what I’m starting just as I’m getting somewhere??

[NoSleepTilDiagnosis]

For over a year my preschoolers health, happiness, energy levels, memory, balance, speech, have been deteriorating. It was very very gradual at first, but has snowballed in the last two or three months.

I have finally - after a shit ton of fighting through the nhs system- got her an urgent appointment to a clinic tomorrow. I’ve just printed out five pages of her symptoms (including explanations to be fair as I’m trying my very best not to speak about how she has ‘problems’ in front of her too much).

It seems like I might finally get someone to look at her in the round and tell me what’s happening to my gorgeous girl and I’m bloody terrified and I almost wish I’d never pushed for this.

I do know it’s the right thing to do, to find out what’s going on and help her however I can but fuck me I’m frightened.

Oh op of course you are scared but you are absolutely doing the only loving and responsible thing for her.

This is your responsibilty as a parent to get her whatever it is she needs, but it must seem terrifying, think of it like this, doing nothing may cause her more issues due to a delay,
also it may well be the first step on the road to recovery...it doesn't have to be a bad thing.
Handhold from here...

What an absolutely wonderful mum you are to be fighting for her so well!

Just think, from tomorrow the load you’ve been baring won’t just be yours - you’ll be on the journey to having trained hands helping to lift you both up: and that’s all because of you.

I hope tomorrow goes well. I’ll be thinking of you.

Thank you both, I am in bad need of a hand hold which is most unlike me!

Yes, I’ve said pretty much exactly that to my husband. Just getting the appointment - at first - lifted a weight from me as I felt that hopefully it wouldn’t just be me trying to fix her anymore. It’s just that now it’s here I’m wobbling!!

So understandable you feel this way! You've done amazing to get to this. I hope you get proper help for your DC and an explanation what is wrong. Wishing you all good things.

This must be really hard for you, but you are doing the right thing. Good for you and keep us updated?

Good luck today @NoSleepTilDiagnosis

I'm not surprised you're frightened, but you've absolutely done the right thing. Good luck for today

All the best of luck for today

Good luck today, you sound like a lovely mum

It's because you love her so much that you are now frightened. You know it is the right thing to do. Best of luck with the appointment and for the future. X

How scary op. You are a wonderful mum x

How did it go OP?

That must have been terrifying. I hope everything went well.

Thank you so much everyone, for taking the time to post and checking back in. She’s to get an EEG (the correct acronym for the electrode things taped to the head I think) next week. I’m hoping (obviously) that it rules out any abnormal brain activity even though that would send us back to the drawing board. It was a huge relief to sit with someone who had the time and inclination to listen to the whole picture. We were there just over an hour. I feel reassured having us the appointment that we’ve all agreed if the EEG shows nothing up, it doesn’t mean an end to the investigations. It just means trying something else. I’ve been so worried about being dismissed again, it’s been such a problem during the last six months in particular. If I hear ‘let’s just wait and see’ one more time I might start screaming and not stop!

You are your daughter's very best advocate. All you can do is push for tests and hope and pray everything goes well. Wishing every good wish for your lovely girl.

Good luck going forward op, we are all cheering you and your DD on..

Good luck , now you're in the system.
Did the Dr make any suggestions as to what they might be thinking ?