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
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?
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
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.
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?