Here some suggested organisations that offer expert advice on SN.

Very down

(45 Posts)
needmorecoffee Thu 31-Jan-08 16:00:21

Paed just called and dd's EEG has got worse from her last one sad although not yet as bad as last July when they thought she might be developing Lennox-gastaut syndrome.
Don't know how much more of this I can take. Life is just shitty. He's doubled her keppra.

needmorecoffee Thu 31-Jan-08 16:03:11

in fact, seeing as I'm hysterical already.... I've just had enough with how disabeld dd is, I want a normal life and I'm fed up of living with no fucking support. Told FIL about the EEG resulkts and he couldn't be less interested. Long as he and MIL get their fucking holiday in Cuba tomorrow.
There's no-one to talk too. My mum doesn't understand and she's depressed and our mortgage application to buy her a bungalow is going tits up and I don't know how to tell her.
We get no support, I have no RL friends and the highlight of my week is taking dd to the physio.
Its always shit and always bad news.
<head in hands emoticon>

yurt1 Thu 31-Jan-08 16:14:20

oh god nmc, no advice at all. I wish I could suggest some way to get support but I know how screwed up the system is.

How often does she get EEG's?

ancientmiddleagedmum Thu 31-Jan-08 16:31:34

Poor you, NMC. You are right, it is shitty and not fair. Can you have a drink or 10 tonight, and smoke loads of cigarettes (well that would be what I'd do). I don't know what Keppra is but I do understand about your in-laws and mother being so absorbed in their own lives that they don't support you. You are not alone though, we are all here on MN. [emoticon of loads of mners putting arms round nmc and pouring her a large one]

theheadgirl Thu 31-Jan-08 16:35:13

NMC - I think we all feel people in RL often don't get it. I find it hardest to accept that things just won't get better, that this is it. I'm sorry you're feeling so down, I know there's no answers....sad
with love from theheadgirl xxx

TotalChaos Thu 31-Jan-08 16:38:28

sorry to hear this, and that your families are so unsupportive.

Mitchell81 Thu 31-Jan-08 17:20:23

Sorry you are having a hard time at the moment. Not that it helps, but I am thinking of you.

NMC, whereabouts are you ?

lourobert Thu 31-Jan-08 19:26:03

So osrry to hear that NMC...so sorry. I know all too well about EEG results so can understand the anguish your going through. what I cant really pretend to understand is how alone your feeling right now with no family or rl friends to talk to.at times I feel alone but im really not i suppose.

Were going to Brainwave on March 19th but were going to go for the week and stay at Burnham-on-sea/ Planning on going to Bristol Zoo at some point. Maybe we could meet up over that week.

moira199 Thu 31-Jan-08 19:30:20

I'm so sorry to hear this. Sometimes it does feel as if there is no end to it all. I'm sorry too that family support is lacking. It is one of the most surprising things about having an SN child - that family and friends have such odd and unhelpful reactions.

dustystar Thu 31-Jan-08 19:33:34

So sorry to hear this NMCsad I wish I was nearer to you so that I could give some RL support and a hug.

needmorecoffee Thu 31-Jan-08 19:44:09

Hi Louro. Meeting up would be lovely. We'll have a motability car by then and actually be able to get more than walking disatnce from the house!
email is bobalinga@yahoo.com
I'm in bristol
Thanks all who replied. I'm still feeling very low but getting stuff ready for dd's op tomorrow. Poor little mite, she goes through so much and I just wish I could make her better.

welovetelegraphpoles Thu 31-Jan-08 20:56:51

NMC - I'd love to be able to offer practical support (wrong side of the country....) but will be thinking of you and your dd. Take care x

Sidge Thu 31-Jan-08 21:35:06

NMC I'm so sorry that things are so shitty sad

We're here for you. You can cry on our shoulders any time.

mymatemax Thu 31-Jan-08 21:38:44

So sorry that its all so shitty at the moment.
Nothing useful to say, I hope all goes well tomorrow.
Max xx

AAW Thu 31-Jan-08 22:25:37

NMC I am new to MN (in fact this is my first post although I have been skulking around for some time!) my DS is 2, he has CP and microcephaly. I have nothing useful to say (nothing unusual there) but just wanted to send you a hug, you sound like a fantastic mum and it makes me so sad that you are not getting the support that you deserve. I hope that it goes well for you tomorrow x

chonky Thu 31-Jan-08 22:27:25

Oh NMC - really sorry to hear about your news. How about that meet up? Please get in touch, I really am not a million miles from you

chonkychops <at> hotmail <dot> com

Will try and mail you too...

ouryve Thu 31-Jan-08 23:34:45

I'm sorry about your news. It's a shame your families are so oblivious to the fact that you at least need a listening ear and a bit of acknowledgement

bullet123 Fri 01-Feb-08 00:09:15

I wish I could help NMC, I'm sorry you aren't getting the help you all need.

flyingmum Fri 01-Feb-08 17:55:32

NMC

How are you and your mite? Feel a bit useless but sending you every best wish and virtual amounts of alcohol, and chocolate

Loli Mon 11-Feb-08 21:28:40

Hi NMC, sorry you're feeling so down, big hugs to you. I think i know how you feel though, im a SAHM, only got the one and shes 17 months. She has a rare brain condition and things are looking pretty bleak, developmentaly shes still like a new born baby, shes also a very puky baby and has epilepsy which so far is uncontrolled. Since having dd have lost touch with all friends i had (not that many), and also dont really get much support from family. Got to the stage where i actually look forward to hospital appointments, physio and OT because its something to do. God i sound really sad. Just wanted to let you know that your not the only one having a bloody shitty time. Chin up hun. x smile

yurt1 Mon 11-Feb-08 21:31:24

Are you new Loli? Welcome if so. It's really hard when your friends all disappear. Are there any SN support groups near you?

Loli Mon 11-Feb-08 22:39:13

Hi yurt1, yes i am new, wish i'd have found this site sooner. there is a support group that i go to twice a month, other mums there have children that are alot more able than my ds and sometimes makes me feel a bit 'why did my dd get such a bit dollop of problems'. They've been really supportive though.

needmorecoffee Tue 12-Feb-08 08:55:53

Thanks Loli. Hopefully Chonky will be visiting me soon hint hint hint

heartinthecountry Tue 12-Feb-08 13:57:14

Hi Loli, welcome to mumsnet - what condition does your dd have?

My dd1 also has a rare brain condition (Aicardi) and epilepsy.

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