In a nutshell, 23 week DD has exhibited jerky movements, rolling eyes, was delayed in smiling and is a bit floppier than she should be. She twitches her fingers most of the time. Also has a 25% centile head compared to 75% centile body length.
Awaiting genetic testing and an MRI scan. Had one EEG that came back normal.
Despite no diagnosis yet the consultant has painted a bleak picture of the future and told us she won’t live anything like a “normal” life.
This is week 3 now since doctors confirmed there is definitely something wrong with her and I’ve held it together until last night when the tears started and haven’t stopped. Older children are 6 & 8 and DP has taken them to the cinema so I can pull myself together but he’s sat watching the film in tears too.
How do you retain normality for your other children? I can’t carry on like this in front of them but I truly cannot get a grip of myself at all, didn’t even know it could be possible to cry so much.
Also once diagnosed, do they just say here you go this is your new life or is there any kind of emotional support for families? Counselling etc? Feel overwhelmed, sorry if this is jumbled and hard to understand.
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Waiting for babies diagnosis. How do we keep our shit together for our other kids?
2 replies
AdamantEve · 16/11/2019 13:07
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