Here some suggested organisations that offer expert advice on SN.
Very down(45 Posts)
Paed just called and dd's EEG has got worse from her last one 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.
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>
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?
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]
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....
with love from theheadgirl xxx
sorry to hear this, and that your families are so unsupportive.
Sorry you are having a hard time at the moment. Not that it helps, but I am thinking of you.
NMC, whereabouts are you ?
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.
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.
So sorry to hear this NMC I wish I was nearer to you so that I could give some RL support and a hug.
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 email@example.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.
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
NMC I'm so sorry that things are so shitty
We're here for you. You can cry on our shoulders any time.
So sorry that its all so shitty at the moment.
Nothing useful to say, I hope all goes well tomorrow.
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
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...
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
I wish I could help NMC, I'm sorry you aren't getting the help you all need.
How are you and your mite? Feel a bit useless but sending you every best wish and virtual amounts of alcohol, and chocolate
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
Are you new Loli? Welcome if so. It's really hard when your friends all disappear. Are there any SN support groups near you?
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.
Thanks Loli. Hopefully Chonky will be visiting me soon hint hint hint
Hi Loli, welcome to mumsnet - what condition does your dd have?
My dd1 also has a rare brain condition (Aicardi) and epilepsy.
Hi heartinthecountry, my daughter has ACC (agenisis of the corpus callosum), microcephaly,epilepsy and a whole bunch of problems because of this. Was kinda researching myself what her condition could be as still haven't got a proper diagnosis as she has other problems they cant connect. Thought in the begining that she may have Aicardi but its been ruled out.
nmc - just to say 'sorry'. All sounds very shit. But fingers crossed for the operation tomorrow - hadn't realised that she was having an op.
I know I can't but sending you a big hug....wish we could be their for you in person, but we all are here for you and each other and we all feel for you.
Can't you get MIL or FIL when they are back to have dd for a night? You need time off....even one night away from your situation may help? You need 'you' time! Cause we don't moan to the professionals they are pleased they have one less case to try and find respite for...ask for help, a break you are burnt out NMC.
If also your dd has had a deteriration and needs extra meds, can you ask for more frequent EEGs as she may be up and down (you said she was worse in July) maybe her EEG profile is spiky and you had it done on a bad week....if you get what I mean. When our dc children deteriorate it is natural to go down with them. Speak to your dd snhv or gp about a break though.....never had one myself so I don't know how hard it is to get one?
You got us though who will listen
Thank Pipin. We don't get a break as the in-laws refuse to have anything to do with a 'disabled' child, heck, in 16 years they haven't given us a break from the other 3!
There's no SNHV here (does anyone see one of these mythical creatures?)
DD having severe cerebral palsy I can cope with - she can't move a thing and has no hand function or speech - but the epielpsy does my head in because the 2 syndromes she has had/have take away her intellect. Its not notmal every day epilepsy. She came through infantile spams with her intelect but if she develops LGS its all downhill from there with a high rate of death
Heart - didn't realise that you had got a dx in the end. Aicardi is so very rare. I'm sorry. How's she doing as it can be variable?
Loli - how's your LO doing? I know thats another variable one as well. Did she have infantile spasms? What drugs have you tried? dd just wemt on keppra and every single movement that we weren't sure if they were seizures or not have vansihed! Its fantastic. It does make her have a pre-menstrual type rage however but she's a bit of a spoilt princess anyhow, being as she's waited on hand foot and finger due to her severe CP.
Hi NMC, sorry to here that your inlaws aren't giving u any support with your dd, but they're the ones missing out. My dd ok at the moment thanks. Shes also on keppra, but have not found her seisures any better, shes also on vigabatrin which seemed to work at first but not any more. they want to start her on other drugs but they have a sedative effect and all she does is sleep anyway so i've refused so far, dont know what to do, the seisures drive me nuts but at the moment her quality of life is poor as she sleeps so much, she'll be even worse if shes having drugs with a sedative effect. Why cant things be straight forward. She also has infantile spasms, got to the stage now where because she's so unresponsive have started to think that every move she makes is some kind of a seisure.You mentioned if your dd develops LGS, whats that?
Hi Loli - sorry, I haven't looked at this for about a week so didn't see your reply. Do you know why Aicardi was ruled out? Not saying for one minute it is Aicardi but ACC and Infantile Spasms together are 2 of the main diagnostic criteria for Aicardi.
Re: IS and medication. I was really reluctant to put dd1 on any drugs initially as I felt they were knocking her out and taking away her quality of life. But our neuro said she felt it was more the seizures than meds making her so sleepy. We added topamax when she was about 9 months old which got her seizures under control and sure enough, she stopped sleeping all the time. topamax is also known as dopamax but it really hasn't had a sedative effect on my dd1.
NMC - we have been lucky with dd1. She is at the higher functioning end of the syndrome. Now 5 and walks independently, signs and has some speech.
Hi heartinthecountry, cant really remember why Aicardi was ruled out, bin through that many dianosis now. She was on clonazepam for her seisures for about a week, but she was even more sleepy than usual, had problems coping with her secretions aswell and was worried about her getting a chest infection as she has a poor swallow reflex. Shes tube fed only although she does have a taste of things now and again, just wish shed wake up for longer periods, only ever see her with her eyes open for a few seconds at a time, seems to have got worse,but suppose thats the epilepsy.
NMC, hope dd is back home safe and well.
Loli, have you tried ACTH for the infantile spasms? Its the first line med along with vigabatrin.
Lennox-gastaut syndrome is similar to IS but it causes many many diffferent types of seizure, tonic, tonic-clonic, status, absence, atonic etc etc and is pretty resistant to any medication. It nearly always causes loss of intellectaul function due to the many many seizures. There's a disctinctive pattern on the EEG. dd started to show signs of having these patterns last year so we did a heavy 2 week course of ACTH which was pretty horrendous but it cleared up her EEG and no seizures till January.
nmc, had just clicked on sn to see if any news on your dd since she was in hospital last week and seen this.
Have no personal experience of what you're going through, but I live in Swindon so only a 30 minute train ride from Bristol, would be happy to pop over and make you a coffee/bring you some cake (I got a book for my birthday called "the ultimate encyclopedia of chocolate so will be needing lots of tasters for my attempts )]).
Once ds is back at school next week I will have loads of time on my hands again so would be happy to pop over .
Hi NMC, ACTH was the first thing they tried but unfortunately it sent her blood pressure sky high and she was really unwell and in hosp for 2 weeks. Saw neuro at beginning of week and he said that it could be possible that shes constantly in and out of seisures and not hopefull that its treatable, although on waiting list to try ketogenic diet. Pretty sure dd has no intellectual function, although she will kick one leg if she doesnt like something, does this count, wish i could be more positive about dd but she sleeps all the time, and when she does open her eyes its only for a few seconds. Really need something to feel positive about. Shes so beautiful, and this is all really unfair.
NMC - thinking of you. I'm not in a good place either at the moment (you answered my post earlier this evening). Not a lot to say apart from hugs.
Where are you Loli? ACTH sent dd's blood pressure through the roof and she was on BP meds but it did clear up her EEG. In hozzie for 3 weeks.
How old is your dd?
Hi NMC, my dd is 17 months. Dont think the hosp thought it was a good idea to carry on with the ACTH as she was having to have so much medication to bring her blood pressure down and was really aggitated. Went onto vigabatrin then and still on it now although hasnt stopped seisures. Docs said right at the beginning that they didnt think they would be able to treat her epilepsy successfully, going to try ketogenic diet but not too hopeful.
Hope your dd is better. How old is she and how able is she?
Friday you're at clinic I know, Saturday OPK for a visit? DH owes me one (going out with his mates on Mothers day ) ....
(wannabe, if you go over can heartily recommend NMC's vegan cheesecake LOL)
NMC Am really sorry you're all going throough this. Feel awful I haven't been able to get over but it wall went a bit tits up and - well you know.
let me know if saturday is OK, and also if there's anything celyn could do with (sorry, a new wheelchair / tand / car out of the question LOL) for her birthday.
Loli - dd ended up on 2 types of BP meds to keep it down and we were skating pretty close to the line. We did a 2 week 0.5 ml's every other day (the second time) and it was awful but it did clear up her EEG (at 3 months of age we did the same regime for 5 terrible weeks and her BP was serious but it stopped the IS)
dd is cognitvely very good but physically her CP is severe and she can't sit, roll, feed herself, use her arms or talk. She's 4. Her delays are soley down to how restricted she is physically and she's as bright as a button. But when seizures are happening - like last year with the LGS type thing, her learning does slow right down. They really have to be stopped. Have you tried keppra? dd started this 4 weeks ago and every mysoclonic jerk has stopped. Marvellous stuff. She's still on vigabatrin though and has been for over 3 years.
Peachy, this Saturady is great. That'll be one vegan cheesecake to go? Send me an email with times etc Dunno about birthday stuff. We have the same dilemma. What do you buy a 4 yo who wants 4 yo stuff but can't move?
Wannabe - most of next week is fine but dd is better on wednesday as she doesn't have school in the morning. School makes her tired and tetchy.
saw you tried keppra. D'oh. Lamotrigine is worth a shot. It doesn't cause more drowsiness.
NMC- does she like DVD's / CD's?
awww nmc i only just seen this hope you feeling a little better?, i wish i was nearer to you as you have been so much help to me this past year! so sorry about your dd and as for your inlaws there are missing out on a wonderfull amazing little girl.
((hugs)) if you want to chat ill give you my msn? its
tracypearson 6 at hotmail dot com
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