I understand what you mean, you need answers. It's natural, because it's so stressing when you're not sure of anything.
It's a bit the same with me and my ds, on the point that when we start the dx assessment for asd with CAMHS, i will be worried that they may say "no it's not asd!" And at the same time i don't want them to say it is. The point is we need to know what is wrong so we can deal with it better even if it hurts.
Hang in there, and i hope you get the answers you need.
Hi Fluffy, Are you waiting results of an assessment with the Paed? I would find out who his secratary is and ring her. I did and was very polite chatty and just asked if the report had been typed up yet and who it was being sent to and for an ETA. She was very helpful.
'Tis all a waiting game I'm afraid and I do know what you mean about the diagnosis. You want nothing to be wrong with her, and yet if, there is a diagnosis, then you will get help and support. It's so difficult.
Hope you get something soon.. and you too mysonben
Awaiting the results of mri scan and eeg. But have a letter that i guess is a copy of what the paeds send to gp? She had FBC when last at hospital and two results are high and 1 low. rest are numbers i dont understand.
She has been refered to community paeds (intregated service for disabled children?) Despite not having results yet. so am i to presume that paeds know already/have a good idea whats wrong with my DD?
Thanks Rivern. The EEG for absences and Jerky arms/legs. so sort of know the outcome.. But she is not yet walking or standing alone when standing aided she has considerable toe arch and a v wide based gait. This wouldnt be due to epilepsy would it??
Thanks, I cant get anymore as to why from the paeds Just they have a list? I checked out the type of community paeds we have been refered to (havent seen them yet) says intregated service for disabled children and i dont even know what that means?
The community paed is your access point for local services, they have the say-so for the Physio, OT, SALT, wheelchair services, sometimes have some weight to throw about for respite, etc. A good community paed can make a big difference to how much and quality of services you get.