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Here are some suggested organisations that offer expert advice on special needs.

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Here are some suggested organisations that offer expert advice on special needs.

SN children

Falling apart

35 replies

needmorecoffee · 20/09/2007 13:59

After 3 weeks of dealing with this hellish steroid treatment and the side effects I feel like I can't cope anymore. She's just screaming and screaming. Tomorrow she has an MRI booked to see if the steroids have damaged something. WTF?! They told me it wouldn't. so I ok'ed the treatment. What if she has a brain tumour?
I'm so tearful but can't break down because of my other kids. I catch a bus to the hospital at 8am, get back at 4 to deal with my boys. No-one here to talk to as DH is staying at the hozzie. My mum is old and deaf and all conversations with her are punctuated with 'what? pardon?' or her fucking barking dogs. In laws can't even be arsed to call to see how DD is. So I sit in doors every night and cry alone. I just can't cope anymore. There seems to be no support for parents going through this prolonged hospital stays and terrible treatment.

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Peachy · 23/09/2007 16:25

Ah we have the crap for model out the bin too

needmorecoffee · 23/09/2007 16:14

sent you an email Peachy. But bring your own bucket
DD still whingy and very very clingy. I supose thats normal for a 3 yo who's been very sick and in hospital but its a pain. A mobile 3 yo could cuddle something but DD wants holding all waking hours.
She's so stiff too. Can no longer stretch out her elbows and her wrists have curled in. Amazing what 4 weeks of no physio will do. Apparently there were none in the hospital. I have a thing about her arms being all curled up in the 'traditional' spastic CP position cos people stare more.

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Peachy · 23/09/2007 13:14

NMC- CAt me or e-mail me ([email protected]), i WILL come over- would ahve been over before now but for this damned sickness (dont worry, hyperemesis, nothing infectious LOL!). I'm not so god on my feet atm but could easily get a train.

saggarmakersbottomknocker · 22/09/2007 19:02

Nmc - glad you and dd are home. And that the MRI shows nothing new.

I think we should set the Mumsnet Massive on your PIL. You need support - I'm sad that they aren't helping you out more. x

needmorecoffee · 22/09/2007 16:57

Thankyou so very much everyone who wrote. DD came home this afternoon. She's still crying and still not herself and heck, still quadraplegic despite a zillion docs seeing her! But the MRI was clear of anything 'new', just her normal brain damage and her EEG, while weird, was improved on the last one so the hellish steroid treatment was worth it.
So we're home. I'm shattered but would like to see anyone who would like to comeover. Peachy and Stringer? Its lonely having a SN child and I don't really know anyonein Bristol. Just knowing someone is coming for coffee would be nice.
But thanks to everyone who offered to help, just knowing people were listening made me feel better.
Anyone who wants to go explain to my MIL that she should be concerned about her disabled grandchild id more than welcome. Feel like givingher a good slapping for her total lack of help and her rejection of my baby.

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BigBeeristheBigBeer · 21/09/2007 22:29

NMC, I'm so sorry. We've chatted before (I change my name from time to time!) and you've always been ready to offer me and others good advice. I'm thinking of your DD and your family.

berolina · 21/09/2007 20:34

will do TotalChaos, thanks.

ShinyHappyPeopleHoldingHands · 21/09/2007 20:33

NMC ((((((hugs)))))) for what they're worth. It won't be like this for ever, honey. Things will get easier.

Stringerbell and Peachy you are wonderful.

Sidge · 21/09/2007 20:15

nmc - hope it all went well with dd.

I'm sorry you are not near me, but it looks like stringerbell and Peachy are close.

Please use them (hope they don't mind me saying that!) and let them make your life that little bit easier. In the meantime keep posting on here and we are all here for you.

PanicPants · 21/09/2007 16:34

No advice but you have my sympathy.

Peachy · 21/09/2007 16:17

NMC dont have the car (and have the kids) this weekend, but if i can come and help next week on my days off (days on- monday, wednesday) let me know, OK? You're only 30 minutes away.

TotalChaos · 21/09/2007 16:11

um not sure I still have it - e-mail me at milkfloatquack at hotmail dot com and I will try and pass it on¬!

berolina · 21/09/2007 15:44

nmc, sorry, sorry, my last post was really, really insensitive crap wording . Have reported myself. Should hopefully be gone soon.

Now again - TotalChaos, if you could pass my email to nmc, that would be fab

berolina · 21/09/2007 15:42

This reply has been deleted

Message withdrawn

berolina · 21/09/2007 15:40

nmc - I can't post my email address - it is very identifying - I don't have CAT facility either... I shall think of a way round this would like to get in touch with you.

stringerbell · 21/09/2007 15:37

This reply has been deleted

Message withdrawn

needmorecoffee · 21/09/2007 15:01

I'm in Bristol and you are all so kind but I know you all have SN kids too.
I haven't got the CAT thingy so can't do that.
Sat here waiting for DH to ring that DD has come out of the GA ok. I had to leave at 1.30 to get back to ds (12) and they hadn't taken her down yet.
And while I'm feeling ranty....want to know how many times MIL has called to see if DD is ok or how we are doing? Not once.

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EmmaJW1976 · 21/09/2007 13:09

Yes, NMC, I would be happy to help you with transport if I can.

If you want to email me it's emmaox at yahoo dot com

tobysmumkent · 21/09/2007 12:50

Message withdrawn

Sidge · 21/09/2007 12:05

I am so sorry that things are so difficult.

Where are you?? If you are anywhere near me I WILL HELP YOU!! Nobody should have to struggle like that

PS If you don't want to put where you live on here, email me on neverenoughsleep at yahoo dot com.

EmmaJW1976 · 21/09/2007 09:45

NMC - whereabouts are you?

Just wondering if any of us could help you?

TotalChaos · 21/09/2007 09:44

NMC - I'm happy to get the school uniform and post it to you if needs be. Best wishes for the MRI scan this morning.

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berolina · 21/09/2007 08:02

nmc CAT me please.

berolina · 21/09/2007 07:59

oh, nmc

I tell you, if I weren't 41 weeks pg I would get over to you and coordinate taxis and cook for your boys (can't drive, sadly). Seriously I would. I'd have to bring ds but he's OK.

needmorecoffee · 21/09/2007 07:42

How is your son Louro? DD was cured of IS on ACTH and kept her intelligence. Been seizure free nearly 3 years but now we're doing it all again. ACTH, fear of regression and loss of skills plus how ill the drugs have made her. 3 weeks ago she was happy and healthy, now she's lost a quarter of her body weights, has an infection and cries constantly.
Plus the nurses trying to finish her off with an overdose.

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