Finding it really hard now....

[proudestmummyever]

I am struggling soo much right now, just not doing well, I am finding everything soo hard.

Jack is bad with seizures right now, my dd has been late for school a good few times now because Jack is up all night, either not sleeping or having seizures.

My mum has just been on the phone saying i am neglecting dd, we had a big argument, huuge, I am sitting here in tears, I really am struggling right now, I am a good mum, and a good person

You poor love.
Are you on your own?
How old is your son? have you talked to your hv about homestart help

Thanku, no I have a partner, Jack gets 2hrs a week respite, he has just had yet another seizure , we were told last week by paed that Jack will probably never b controlled with seizures, he also has brain damage, can't walk or talk, or really use his hands, he has seizures daily , he is just 2.9 years xx

The paed is referring us to a childrens hospital to see another dr to see if she has any ideas, cos the paed says they might have to try older drugs now, but they have more side effects

have you tried Sleep Scotland for the sleeping issues?

Also Epilepsy Scotland has a helpline and can give you advice on drugs and side effects

I haven't tried tht glittery, thanku xx

have you tried anything for the not sleeping?

Sorry that you are feeling so down It's such a long process with epilepsy meds isn't it? We are on our 4th now with DS which has taken up 4 and a half years of his life We were just at his school today for his SEN meeting and it suddenly hit me that he didn't used to be SEN at all - in fact when he was 3, before all this medicine lark started, he was incredibly bright to the point of being gifted. Epilepsy has certainly robbed him of that.

There are so many different medicines out there - our epilepsy nurse was telling us last week that there are three new ones out just this year - so you musn't give up hope.

The Muir Maxwell trust are based in Scotland aren't they? Do they have anyone you could talk to? Does your Mum help out at all? You must get some help re your sleeping as everything seems so much worse doesn't it when you are knackered.

Take care

Proudestmummy, I'm sorry you're finding it tough at the moment.

Have you asked for more help for mornings?

Respite is not the same as extra help at home, and it sounds like you could do with an extra pair of hands to help get your dd to school. I've found that even other parents are delighted to help out and take my other kids to school for me when we are having problems. When people say "is there anything I can do to help?" I always now reply - yes please - I'll ring you when I need a lift for the kids, if thats ok. And they are always more than happy to be needed!

I have always been totally clear with Social Services that we need respite but we also need help in the home.

not sure what bit of Scotland you are in but maybe Social Work could send someone from Homecare in in the mornings?

Sometimes Direct Payments are better because then you get the same person every time? We tried Homecare but I couldn't cope with a stranger in my home at breakfast time - I felt I had to be up extra early - which totally defeated the point!! We do have a Direct Payments worker who comes 2 hours 2x a week who does feed, meds and bath time.

i'm still waiting to hear about direct payments, i have refused Homecare for the same reasons melted they also wouldnt do tube feeds which kinda defeated the purpose!!
one of my friends whose son is tube fed had Homecare in and they got her other kids fed and washed while she saw to her son

Hi everyone, thanku for replying, I have to call a place nearby to sort out counselling, yeah I know, I feel we don't get enough help, my mum helps if I ask, but is scared to have Jack nw, as he had a very scary spasm in her bath recently and she has kinda lost her confidence with him

I hope there are a lot more meds we can try, Jack is on something like the 7th med nw, Jack doesn't just have epilepsy, he has a rare genetic disorder, involving damage to the left and right temporal lobes in the brain, affecting co-ordination, memory and sense of smell, and this is where the epilepsy is coming from, the brain damage, he has hypotonia(very low muscle tone) and hypermobility(very flexible muscles), he is tactile defensive, hates a lot of feelings of things that he touches, he used to be able to sit, now he can't, he can't even grasp a toy or anything else, but I truly blame the meds for this, he is now on Nitrazepam 3.5ml twice a day, and topamamx 75mg twice a day and he gets melatonin 7mls at night, but he still wakes up xx

what do you think wakes him, could it be muscle spasms?

Glittery I have no idea what wakes him

Maybe I'm the worst mother in the world, but my children have been late for school on more than one occasion, and I am not up all night coping with a child having siezures...

Just explain things to the school and they will understand, it's not like you're being late due to disorganisation, and I really don't see it as the end of the world.

Sadly, when one child needs us more than another, especially if the need us physically, there isn't much we can do about it. I am quite sure you're not neglecting your daughter and if your mother is so concerned, why doesn't she offer to help you in the mornings, stay over at night so you can get some rest, look after your son during the day occasionally so you can get some 'alone time' with daughter, or take daughter out herself to do somethign fun, just for her.

No-one is perfect, even if they appear to be from the outside, don't beat yourself up about it.

Thanku midori, tht was such a nice post, and you are spot on!! Riven, I know Jack's is epilepsy, severe epilepsy, I was just stating the reason behind it