Talk

Advanced search

Here some suggested organisations that offer expert advice on SN.

why wont the fucking doctor listen?

(21 Posts)
sarah293 Tue 26-Aug-08 12:03:54

Message withdrawn

jimjamshaslefttheyurt Tue 26-Aug-08 12:18:43

God you poor thing. Is there an epilepsy nurse you could talk to (just wondering whether someone with more listening skills & hands on epilepsy experience might be more helpful in giving advice)

sarah293 Tue 26-Aug-08 12:21:56

Message withdrawn

amber32002 Tue 26-Aug-08 12:31:50

He says it's your problem? Oh bl**dy hell (if you'll pardon my expression). Of course it's not 'your problem'. It's your DD's problem and he's her dad. Would the epilepsy charity helpline have any bright ideas? www.epilepsy.org.uk/info

sarah293 Tue 26-Aug-08 12:43:49

Message withdrawn

electra Tue 26-Aug-08 13:23:59

Message withdrawn

vicsta Tue 26-Aug-08 14:21:36

Riven - how long are they lasting? I'm new to this as DS only 10wks but he's a myoclonic seizurer (?) too. I know you are far more experienced than mesad, but has DD got a neuro consultant you could call? DS's has made herself available to me (possibly coz he's so young and unmedicated at the mo)and we have also been given direct access to the children's hospital. Is this available to you? Without wanting to teach you how to suck eggs - we've been advised that any seizure approaching 5 mins requires an ambulance, not a trip to A&E. i do hope I'm not being a patronising cow coz I'm sure you know all this already, but I know a little of how you feel. I'm bloody terrified every time. xxxxx

sarah293 Tue 26-Aug-08 14:47:24

Message withdrawn

trace2 Tue 26-Aug-08 15:12:45

oh riven so sorry are you not on open door at the hospital on childrens ward? i really think you should get her in for your peace of mind as much as your dd needs checking

vicsta Tue 26-Aug-08 15:15:05

Same as DS. I always think i'm over-reacting too, but its sooooo hard to know what to do. Like you, I think he's had enough damage to his little brain and I want to do everything I can to stop there being any more. Have had DS admitted twice through direct access, and, with hindsight, I suspect I really did over-react on both ocaissions. BUT, at the time, I felt it was the right thing to do and I wouldn't hesitate to do it again. That said, it is very easy for me at the mo because we have direct access, what'll happen after we lose that i don't know. Probably tie myself in knots worrying that I'm not doing enough or that I'm over-reacting. God its hard. I really do sympathise xx

sarah293 Tue 26-Aug-08 15:19:56

Message withdrawn

trace2 Tue 26-Aug-08 15:23:14

oh god look if you feel she needs to go in ring the ward tell them how you feel, please

sarah293 Tue 26-Aug-08 15:27:57

Message withdrawn

TotalChaos Tue 26-Aug-08 20:00:38

sorry about the myclonics, hope the GP appointment went OK.

mummypig Wed 27-Aug-08 01:12:22

nothing new to offer but thinking of you Riven

vicsta Wed 27-Aug-08 14:18:34

hope you & DD are having a better day today.

sarah293 Wed 27-Aug-08 15:31:11

Message withdrawn

loudmouthmum Thu 28-Aug-08 00:29:21

((((HUGS)))). DD had loads today, luckily only short ones. Are you in contact with EA? My local lady is awesome, she is always there to calm me down when I need it. We have no epilepsy nurses in our PCT, closest are 60 miles away. But how can you not have open door to the children's ward??!! Something wrong at your hospital! Even ds2 has open door for his chronic asthma. hope your dd is feeling a little better now. Hope YOU are feeling ok.

vicsta Thu 28-Aug-08 15:43:00

Any better today? How was GP? Hope things are improving xx

sarah293 Thu 28-Aug-08 17:26:02

Message withdrawn

Justus Mon 01-Sep-08 19:57:55

Hi,
Riven, I am pretty new to seizures but understand your frustration. My DD had a seizure abroad recently -very frightening, taken to hospital where she got EEG that showed spikes - Dr there put her on Keppra and said she's definitely got epilepsy. They said she'd probably had a seizure before, and I think she has definitely had little absence seizures when younger.
She had been to hospital in the UK for tests with problems before (had an MRI and EEG 3 years ago) and doctors thought it all mental, not physical. Went back to them two weeks ago since coming back from holiday. Drs here dismissive of diagnosis, say seizure likely due to her being tired. She's now got a one hour EEG in 2 weeks and another 24 hour EEG 2 weeks after that. Meantime she's still on the Keppra and seems pretty OK apart from tired.
I know the Drs in the UK are busy but their attitude was/is really poor - do not look me in the eye and don't listen. I think they think I am just trouble - makes you feel that somehow you there to give them hassle! GP in August looked her in the eye and said just as well your seizure was just a few minutes long, otherwise 'you'd likely have permanent brain damage'. Nice.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now