I am starting to panic again about this appointment

[Fio2]

with the neurologist. I am feeling really nervous about it all. The genetic dr said if they could see her original Ct scan (she thinks there is damage on it but subtle) then he may diagnose dd on wednesday. i am really starting to worrry, i dont know. I keep thinking what if he diagnoses a progressive condition?> would that be likely?

The genetic dr seemed to think dd had some kind of 'subtle' brain damage or some slight structural problem. my mind is working over time. i wish i could just chilld

will you tell me off please

don't worry, I went through the same thing with my kids, they thought that it had to be genetic, but it wasn't and they both had CP

Oi Fio, just chill (wags finger)!!
Don't blame you though, just hope all the worry and heartache isn't wasted on some vague bo**ocks. I don't know about progressive conditions, wouldn't they have been more likely to have found that before?
Fingers crossedxxx

Fio - understand the worry. But I think Davros is probably right that a progressive condition is more likely to have been picked up before. Try not to worry hon.

do you think? My rational part of my brain says "progressive would have been picked up before" and the other side is acting all strange today

Fio - hope it goes OK and you get what you need from this visit. Have they managed to get hold of the scan records?

Now be a good girl or you'll have to go on the naughty step

I dont know about the noites. guys have requestyed them several times and Stafford said they had sent them on, then they said they couldnt place where the notes were. So i rang our old CDC and asked to make an appointment with the paed there and off the secreatry trots to fetch THE NOTES. I asked her to tell me what was in the notes, which was everything, CT scan, test results etc and then i informed her we had moved and then rang Guys to tell them where exactly the notes are. i have rang guys to check they have the notes but no-one ever rings me back so i will find out on Wednesday if they have them,. But tbh it is a complete nightmare

Its rubbish ain't it??

I know you had trouble getting copies of stuff - have you ever tried asking to go in and read the notes at the hospital? You can do this at the North Staffs and just copy the bits you want. Maybe worth trying to orgainse for next time you're up here.

Oh fio sorry you are going through this

awwww fio- it's normal to feel like this. then they'll tell you it's fine and you'll feel exhaustedfrom all the worrying. I prescribe red wine.

Yeah, I second that prescription. Appointments are a bloody nightmare. We're all here for you

too much red wine today i think

Good luck for tomorow fio

Hope the appointment goes well Fio.

Fingers crossed for you today Fio xxx

Fio how did it go? Have been thinking about you a lot today xx

Fio? Any answers?

Fio - have only just seen this thread. I hope it went well, thinking of you. xx

oops sorry, I had to cancel as the car was still broken down and even though we were going by train dh needed to pick up the car before we could set off and it wasnt fixed until 5.30pm! So i had to cancel again. i felt really bad about it, but I rang up and said is there no way he can see us at a local clinic (he does 2) it costs us 60quid to get into Guys and tbh i think its a bit much as dh has to have time off aswell and so do both the kids. its a two hour journey and we have to either change trains or tube it aswell, which tbh is a nightmare. She cant cope with steps at all esp when its busy. i feel like i am being really selfish, but I have requested before that he see us locally and he never returns my calls, still dont know if they have got the notes either

was thinking of going to see my GP to see if he can write me a letter requesting he see us closer. What do you think?