Here are some suggested organisations that offer expert advice on SN.
Falling apart(36 Posts)
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.
shit im so sorry you're going through this alone
please keep talking if it helps you x
I wish I could do more than say I'm so sorry for you and your dd, that it's so very hard.
Is there any access to counselling for parents at the hospital?
sorry you are going throu this and not having anyone to talk too either, i am usually around in the evenings and will happily chat to you
Is it ACTH your dd is on? I've heard many tales of how awful it can be. So sorry you are having to go through this.
I hve never heard of the steroids (if it is ACTH) damaging anything though. Horribly scary for you.
You are right about lack of support. Parents are just supposed to get on with it right?
I'm sorry you are going such a prolonged worrying time with your little girl and also that you don't have any family close by to relieve the burden. I wish I could do something tangible to help but as onlyjoking says, I'm happy to chat about anything and everything of an evening too. The best thing about this place? you don't have to pretend, if you feel crappy you can be crappy and the support will still come flooding in cos MN has some really very special people.
I'm sorry you're having such a crappy time. Why on earth didn't they tell you about possible side affects?
Do you know about www.specialkidsintheuk.co.uk? Like MN, it's a great on line forum but specifically for parents of kids with special needs. It is very active and I've found it really helpful, practically and for emotional support.
needmorecoffee. Im so sorry your going through this and I wish that I could do more. Youve been such a help to me ever since my son was dx with IS in April 2006 and you helped me loads through those dark days on the yahoo support site.....I wish I could do more to help you now.
There was no suport for us when we were lunged into this when my son started having sz's but luckily we had such supportive family. Not once at any of my ds umpteen hospital appts has aanyone asked how we're doing....glad they dont as it would be enough to make me cry no doubt.
Your doing an absolutly wonderful job for c and she knows that your there for her. Stay strong and keep on talking to everyone on here.
I'm so sorry that you've had no RL support with all this.
Thanks Louro. Am struggling today. I am disabled too and use a wheelchair to get about. Since DH is at the hospital 24/7 (been 3 weeks now) I am struggling at home as he cared for me too and did the stuff I can't do. So my lads are having to do it which just isn't fair. But there's no help from the SS.
And getting to the hospital daily is a nightmare. Some days I hobble with sticks to the bus stop, others I've had to use a taxi. Some days I'm lucky enough to find a taxi that will take my powerchair but mostly not. I've spent hundreds getting to that bloody hospital. There are no wheelchair taxi's available at the weekends at all (are disabled peopel not allowed out at weekends?)
I finally blew my top at DD's SW and they've offered to pay for taxi's (after 3 fucking weeks) and ask a charity for the money back.
Gods I feel whingy but just getting to the hospital is a struggle that leaves me in tears now. Aren't disabled people allowed to visit their sick children? I don't have any friends who can run me there (and who'd want to spend an hour in traffic each way every single day). Family wont help because my in-laws are bastards.
Its just hard hard hard. Poor kids have been cooking pasta and beans on toast for themselves for weeks and shopping for me when they get in from school. Thats not right.
I'm lucky in that I can hobble but if I was totally wheelchair bound how the fuck would I get to the hospital? Community transport needs to be booked weeks in advance and doesn't run at weekends anyhow. One day I did the 7 mile run in my powerchair cos I was desperate. I left at 7.30 am and got there at 9am crying with pain over every bump and kerb that wasn't dropped and wheels covered in dog shit. Couldn't even open the stupid hospital doors as they are too heavy for a wheelchair user and had to cry in the corridor until someone came along.
Thanks for letting me rant guys. Just getting it out helps.
Got a wheelchair taxi coming today (hopefully). DD ishaving an MRI under a GA and a EEG this morning. Poor DS wanted me to go buy him some school uniform as his shirts and trousers are too small but I haven't got time.
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.
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.
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.
NMC - whereabouts are you?
Just wondering if any of us could help you?
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.
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
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.
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.
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
um not sure I still have it - e-mail me at milkfloatquack at hotmail dot com and I will try and pass it on¬!
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