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Feeling low & Confused

(6 Posts)
Fluffypoms Thu 24-Sep-09 11:24:43

Have posted a few times on DD.Feel crappy today so wanted someone to talk too sad

DD is 18months is hypermobile and has hypotonia isnt yet walking/cruising
she has absence episisodes and frequent night waking and will be rigid and inconsolable whih is hard to watch as nothing i can do for her.

After having A MRI & EEG and plus full blood count still no closer to knowing whats wrong.
MRI showed a shadow (developed normally but something has moved) and EEG spikes and epilepsy specialist has watched video and looked at EEG and said it is epilepsy. but pead doesnt want to start on treatment yet?
she will be having Physio and referd to nuero at GOSH.

Who will be giving the dx? does anyone Know.
Just feel really confused by everything when pushed pead said yes looking at neuro problem involving muscles not much else.and if there is eye witness accounts plus confirmation from epilepsy DR that it is epilepsy why are they still doubting?
I am new to this and thought some of you guys might know more?

Thanks for reading and letting me winge smile

Fluffypoms Thu 24-Sep-09 11:26:35

And a blood result showed high levels of something >cant remember what<
which is a indication also of having epilepsy too.

BriocheDoree Thu 24-Sep-09 12:11:55

Hey Fluffypoms. Some very un-mumsnetty hugs, large cup of tea and slice of virtual cake coming your way.
DD is quite different, but I can imagine waiting for a dx and waiting for something to HELP your DD must be awful.
Hope you get some answers from the neuro and hope physio comes soon and helps with her tone and mobility!

Fluffypoms Thu 24-Sep-09 12:50:52

smile thanks

Fluffypoms Thu 24-Sep-09 17:30:18

bumping for advice.
thanks

PheasantPlucker Thu 24-Sep-09 17:57:36

No real advice, it's hard waiting for dx. Maybe chase up the physio if you can?
Take care of yourself x

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