Should i try for DLA for my daughter

anj_S

Hi
Havnt posted on here before but have been a "lurker" on the forum in the past

A few of my friends have suggested that i consider applying for DLA for my 13 year old daughter but Im not sure if i would be entitled to it. And dont want to feel like im making a fuss, or people to think im not coping/just moaning

My daughter was diagnosed with epilepsy a few months back. She is on medication and her seizures are not that frequent, maybe every couple of months but when she has had one they have been quite serious. The last one she had vomited post seizure before i found her and had inhaled it. Thankfully she was ok but that could have been extremely serious. However because they are not that frequent im not sure if that would mean she wasnt entitled to claim.

We really are trying not to let it change our lives but in many ways it has. I do have to keep a much closer eye on her than i did of her sister at the same age. Ive looked at some of websites that have been linked from here on previous posts and done a list of things that i have to do throughout each, that if she didnt have epilepsy would not be needed at all/as much

Her main risk time for seizures is whilst sleeping, when first getting up and when tired.

She is very difficult to wake in the morning. I believe this is because of the meds not just because shes a teenager!! so need to keep calling, going in checking on her several over about 20-30 min period each morning.

Stay upstairs whilst she showers. I dont actually go in the bathroom withher. she leave the door ajar and im in the next room but I wouldnt go out of earshot.

School keep an extra eye out. Particularly PE, swimming, cookery, technology etc.

She walks to and from school with her sister (six former) but if this isnt possible any day then she is collected as i wouldnt wish for her to walk back alone as i would have let her sister at a similar age, particulary as its quite a rural area so there wouldnt necessarily be passers by if anything happened.

Each day i have to remind her to take her medication. the one day i didnt she did forget and had a seizure

Nighttime is probably the worst as her seizures have been during sleep. There are no warning signs, she just suddenly has a tonic clonic seizure, and has fallen out of bed on occasion. They usually last about 2 or 3 minutes. Post seizure she is extremely confused and disorientated, will wander, not able to speak for a while, does bizarre things, such as trying to eat bathroom soap.

Because of the risk of a seizure i physically check on her probably about 3 or 4 times a night, and also at epilepsy consultants suggestion (because of the vomiting post seizure) we use a baby monitor throughout the night. Obviously most 13 year olds wouldnt need this level of supervision. It is quite exhausting and i cant remember the last time i slept soundly as i always have one ear on the monitor.

I just think that because the actual seizures are not that frequent the DLA will say we are not entitled, rather than look at the risk which is there every day.

Apart from the epilepsy my daughter has no other health problems and is very bright/doing well at school.

Any thoughts most welcome. Thanks for listening

Owain_Moneysaver

Have a look through
http://www.epilepsy.org.uk/info/entitlements/disability-living-allowance
and (for children)
http://www.cerebra.org.uk/English/getinformation/finance/Pages/DisabilityLivingAllowance.aspx

For children under the age of 16, to receive the care component it has to be shown that they require substantially more attention or supervision than a child of the same age normally needs. For instance, if your child requires supervision when eating to ensure s/he does not choke, you will have to show that the attention given is substantially more than would have to be given to a child of the same age anyway.

So as regards waking and showering, that might not be substantially more attention than required by a teenager, but the night-time physical checks and medication reminding would probably qualify, as would day time attention whilst cooking etc. You might also consider whether being outside alone might qualify for lower rate mobility, eg needs to be out with friends or someone who can phone for help if a siezure occurs.

[Deleted User]

forgetting the child side of this and looking at the "epilepsy" alone then there are 2 things that in my experience with dla and elipepsy that are looked at,one the frequency of the seizures and 2)wether a person gets any warning of an impending seizure
personally i would say that every 2 months whilst not pleasant could be worse(i get dla but i have around 3 biggies a week plus 4/5 absence seizures a day,and yes i get dla)
and of course dla isnt paid for an illness or condition but is based on care and or mobility issues
BUT there is nothing to stop you applying for dla on her behalf
have you looked around the NSE site with its helpful advice,forum and helplines?
http://www.epilepsysociety.org.uk/

its all free

gingergee

Most defo you should!!!! My 2 yr old is undergoing tests at the min as she has episodes of absences. Scares the living daylights outta me. If diagnosed i wouldnt claim as i think it doesnt add to her care needs. Get CAB to help, dont go it alone, and make sure you have emotional support for yourself if needed xxxx Hope things go ok xxx

Anubis_2

While the frequency isn't there, the "no warning" is, so on that basis you *may* be awarded low rate care and low rate mobility (for outdoor supervision)

Broke_n_Broken

You should DEFINITELY claim DLA.
Don't see it as judgement of your ability to cope, it's there to help you with the added financial obligations and day to day changes.
Think about it, how much would it cost the NHS to do what you have to?
Go to the direct.gov website (search DLA) and it will explain that it doesn't matter what the condition is, it's how dealing with it affects you (ie. your daughter). The form is quite long, but it gives you a lot of opportunity to explain the situation and the potential risks.
Oh, i should say think about it from your daughters point of view, not yours, it's not the help you need, it's the help she needs, even if she gets it off you already

rogerblack

woodbine wrote: »

forgetting the child side of this and looking at the "epilepsy" alone then there are 2 things that in my experience with dla and elipepsy that are looked at,one the frequency of the seizures and 2)wether a person gets any warning of an impending seizure

The reason why warning is important is that if there is warning, the person can (often) make themselves safe.

In this case, as it occurs when she's asleep - and there are real risks of a severe effect due to vomiting - she may qualify for 'watching over' all night.
This would entitle to middle-rate care.
It's definitely worth making an application!

GlasweJen

I think you have a long shot chance of getting some type of DLA award for her but when she applies as an adult it will stop as her seizures aren't frequent enough.

If her seizures are only every few months and well controlled by medication the decision maker may think you're just supervising more because you're being over protective. But the worst thing that can happen is they'll say no so I'd apply but not get my hopes up.

QuackQuackOops

You can always try however it is extremley unlikely that any DLA would be awarded based upon the information given here.

[Deleted User]

rogerblack wrote: »

The reason why warning is important is that if there is warning, the person can (often) make themselves safe.

In this case, as it occurs when she's asleep - and there are real risks of a severe effect due to vomiting - she may qualify for 'watching over' all night.
This would entitle to middle-rate care.
It's definitely worth making an application!

im wouldnt argue that its worth applying,however from experience gained on other forums in the last 14 years i was trying to suggest that having a seizure every couple of months(even at night)may not be enough for a successful claim

i`m sure its not a nice thing for either the child or parent,but does that mean it would result in dla being awarded?personally i doubt it

anj_S

Thank you so much for all the replies. I have decided to make the application, working through my drafts now!!!

Will see what they say. Its hard for me to be objective and see if i am being over protective. Just never want to see her choking on her own vomit again, and will do anything to make sure she doesnt.

Consultant neuro did actually advise that she should not be in an isolated room whilst she slept, and that we move her room next to mine which ive done, and that we use the baby monitor OR the alternative was she slept with me!

Anj