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Crappy EEG

(23 Posts)
sarah293 Fri 12-Sep-08 17:29:53

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TotalChaos Fri 12-Sep-08 17:37:11

bugger. sorry to hear that. have you been able to look at the EEG yourself, as you seem very knowledgeable about such things yourself, to help you take a view about what treatment next. and that's so shite about g-tube and diet.

2shoes Fri 12-Sep-08 17:53:08

omg that is crap
I don't know much about the diet stuff. but I know that g-tubes bloody important.
feel f"$%^&&* angry for you

silverfrog Fri 12-Sep-08 18:18:00

so sorry, riven.

I know nothing about any of those issues (not much help, me) but i have seen you post about them before, and i know you were gearing up for the diet and G-tube.

It's really crappy when essential things are denied due to funding.

dustystar Fri 12-Sep-08 18:21:38

Bloody hell Riven thats awful. I'm so sorrysad

sarah293 Fri 12-Sep-08 18:24:13

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misscutandstick Fri 12-Sep-08 18:43:15

aww riven im so sorry to hear that, thats really really crappy news.

I want to send you {being strong} vibes as, although i dont know you well, I know that you will fight all you can for your daughter as you have had to so many times, and made such a difference to her life.

good luck with this next battle, {{{hugs}}} and hope. XXX

sarah293 Fri 12-Sep-08 18:46:02

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dustystar Fri 12-Sep-08 19:04:41

I'm not surprised you're tired with all you have to deal with. I think you are amazing and you're dd is very lucky to have you.

Peachy Fri 12-Sep-08 19:08:14

is this the resukts you were waiting for when I saw you?

poor dd sad. I know nothing technical on this but your dd is so happy- benzo's would seem so sad for her

how can they refuse a g tube? she needs it to gain. its a real medical need ffs <<swearing very loudly at your pct emotican>>

WedgiesMum Fri 12-Sep-08 20:05:43

Sorry to hear this riven. Can't believe your PCT grrrrr!

Woooozle100 Fri 12-Sep-08 21:41:03

that's cack. Can't believe g tube can be refused at this stage. Hffff

vicsta Fri 12-Sep-08 21:46:19

So sorry Riven. we have 3rd EEG on Monday for DSs worstening myoclonics. Am expecting them to discuss medication now. Gutted as he has just learned to support his head and smile properly. Can't imagine I'd cope if the drugs take my smiley, happy little lad away from me. Hate it! Am gutted for you and lovely DD. As for the PCT - twats - have you considered moving? Really, from the posts I've read you seem to have to bloody battle for everything and it's not fair sad

Seuss Fri 12-Sep-08 21:49:27

angryYour PCT are the pits. How can such important things be denied because of flaming funding??!?

I'm sorry I don't know much about epilepsy and the medication but am thinking of you both.

Seuss Fri 12-Sep-08 21:51:37

vicsta - sorry your ds is having a tough time too.

Tclanger Fri 12-Sep-08 22:00:36

Message withdrawn at poster's request.

madmouse Fri 12-Sep-08 22:47:55

Just a message of support Riven, you must be so tired from fighting for what should be there for your dd sad. I remember how tired I got just fighting for alcohol free drugs for ds. And that is nothing in comparison.

Do you have the energy to contact your mp? Withdrawal of treatment for a small child is sick angry.

sarah293 Sat 13-Sep-08 08:16:29

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magso Sat 13-Sep-08 09:57:23

Oh Riven! Sending HUGs!
Am so sorry all this is happening to you. Fighting for your child (when you frankly should not have to) is exhausting enough but when you're ill yourself it must be impossible. You probably need time to deal with your own health worries and that must be difficult with when you are so worried about DD.

TotalChaos Sat 13-Sep-08 10:01:27

sorry you have all this hideous worry, on top of your concerns about DD.

my mum had years and years of irregular heavy bleeding, went through the hysteroscopy/biopsy route multiple times, and they never found anything. Unpleasant as the gynae symptoms can be, they aren't necessarily down to anything sinister. Eventually she had an endometrial ablation which sorted it, but then she was past 50 and had given up hope of having more kids. have they done a blood test to check your iron levels?

sarah293 Sat 13-Sep-08 10:39:47

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BriocheDoree Sat 13-Sep-08 11:51:21

You have every right to feel pathetic and sorry for yourself seeing what you are going through. Nothing useful to add, but wanted to post hugs and support.

madmouse Sat 13-Sep-08 16:43:50

Riven not sure you need to be grateful and that others have it so much worse. I for one have it al lot better blush

Can't believe that you have so much to deal with in terms of your own health. Wish i could help.

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