Epilepsy in a toddler and DLA/benefits

Bea89

Thank you for all your replies.

Can some one clear something up for me?

Iv been told to claim carers allowence but isnt there a care component with dla?

What on earth am i entitled to? they dont make it easy do they.

Will be getting in touch with CAB to get an appointment.

Theres no one else i could compare her to , she was a very sweet little girl before we started her on the meds and now shes just so angry and so hyperactive (which i know is better than her fitting) its like giving her 30 packets of smarties and then watching her melt down a few hours later and then she just screams everything , gets herself in a complete mess and just fall asleep. The consultant told me shes nearly two and they dont call it terrible twos for no reason but she was never like this before the meds started. yes she had the odd tantrum that lasted 2 mins but theres last for 30mins and she gets herself in a complete mess. When her meds were reduced by the doctor she was a bit hyper active but not angry.

sandy71

You can claim carers allowance on top of the DLA as long as she gets middle or high rate care and earn (I think) less than £95 per week.

Why don't you try and apply and see what happens, it's worth a try.

Try the website woodbine told you about, he pointed me in that direction and although I haven't joined yet (yuo can read the forum without joining) there is loads of info on there.

lauhen

I have no idea about any of what you are asking, but i just want to say i hope you get it all sorted, so that your little one can have the care she needs to help her and to help you, and that she gets to go to nursery etc. I have epilepsy, my sister does, my cousin and my aunty, so i know what a nightmare of a situation it can be. I am keeping my fingers crossed that my son and daughter dont get it, me and my sister both were diagnosed with it when we were teenagers, they say it doesnt run in families but there are a few of us with it.

Keep doing what everyone above is telling you to do and get the support that you need.

Take care.

getcarter

I receive DLA for my 13 yr old, we've been getting it for about 4 yrs now.

Just remember you need to write in your Worst Day, last time I didn't (was obviously in a good mood) and was refused, appealed and now receive it again.

sandy71

getcarter wrote: »

I receive DLA for my 13 yr old, we've been getting it for about 4 yrs now.

Just remember you need to write in your Worst Day, last time I didn't (was obviously in a good mood) and was refused, appealed and now receive it again.

That is not right but it is a very common myth. You fill in the forms as honestly as you can. I put what it is like on my worst day and also a good day. I said that my condition varies from day to day and they accepted that.
I was awarded it without appeal.

Aputsiaq

getcarter wrote: »

I receive DLA for my 13 yr old, we've been getting it for about 4 yrs now.

Just remember you need to write in your Worst Day, last time I didn't (was obviously in a good mood) and was refused, appealed and now receive it again.

Well there you go. Another one who doesn't know what is what.
When someone fills in these forms as the worst day, the people looking at the forms think "yeah right, who are they kidding". Do you honestly think they are all stupid and just push a pen around all day?
Its the people who do this that get rejected because they come across as though they are trying it on.

The forms should be filled in honestly. If you feel great 2 days out of 7, say so.
I've always been honest and have never had to appeal and that's a pattern I'm seeing more and more of.

Invasion

Filling in the form based on your worst day is fraud. With something like epilepsy which can vary so hugely writing (for example) that your child has fits 5 times a day, everyday, when in fact it's only on her worst days, which are twice a month, is going to get you into big trouble. Expressing yourself carefully, getting help with the forms from professionals and backing it up with medical evidence is the best way to get DLA.

OP, really not meaning to offend, but could her behaviour change have anything to do with you maybe treating her differently since diagnosis? I'm not suggesting that it does, but just thought it might be something for you to keep an eye on for any change... But also it could just be coincidence and she may have started to have bigger tantrums with or without the new meds.

I was on Epilim for chronic pain and found it left me groggy, and I would sleep for 18+ hours if given the chance, I didn't feel well and it generally didn't agree with me. Maybe worth asking about changing meds if this continues? Good luck

wornoutmumoftwo

Just found out the form I filled out for my friends little boy has been processed. Took about 5/6 weeks but they had the school right behind them.

System

my 12 yr old gets dla for her epilepsy ,her 1st claim went through straight away and although it wasnt due to be renewed untill july of this year i asked them to reassess it just before xmas and the award has been given untill she is 16. dont stress about the forms they arent that bad you just need to read them carefully and take your time filling them in.
good luck.

Indie_Kid

CHRISSYG wrote: »

my 12 yr old gets dla for her epilepsy ,her 1st claim went through straight away and although it wasnt due to be renewed untill july of this year i asked them to reassess it just before xmas and the award has been given untill she is 16. dont stress about the forms they arent that bad you just need to read them carefully and take your time filling them in.
good luck.

And explain everything - no matter how small it might be.