Epilepsy in a toddler and DLA/benefits

[Deleted User]

Bea89 wrote: »

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.

sorry are you saying the meds control the epilepsy?if so then unlikely to get dla

getcarter

Aputsiaq wrote: »

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.

I have never knowinly committed fraud. I didn't say you make it up, I also didn't say that everyday is the worst day immaginable. my son has seizures up to 5 times a week, the one time was were going through a good patch and I mentioned this, was refused, at that time he reverted to his usual 'timetable'. i told the truth, not trying to commit fraud and was awarded.

This has really got to me you know, i was only trying to help!

Bea89

Hi every one

Just wanted to update you , i have some one from CAB coming to help me fill out all the forms , she said it could take up to 3 hours and she might have to come back :eek:

Her meds havent been controlling it , shes still fitting

Indie_Kid

Bea89 wrote: »

Her meds havent been controlling it , shes still fitting

You need to make this clear on the form. Does she get a warning before she fits?

As for the 3 hours - yeah, the forms are very long.

kimberley111

my son is 9 and has had epilepsy for the last two years,he has generalised myoclonic epilepsy with the showings of juvenile epilepsy.He is still uncontrolled,he has 3-4 toniC clonic seizures a week and up to 20 absences and jerks during the day and about 10-15 a night,hes never had a decent nights sleep for two years.Dylan has just had his DLA renewed for the next 3 years,he gets middle rate care and low mobility,he got his letter to say it had been renewed two weeks after i sent it.I put his hospital letter in that was dated in january that said he was fitting up to four times a week and i also put in his school care plan.Dylan is currently sitting with a fracutured elbow after having a myoclonic jerk at school,this is two months after a jerk caused him to break his wrist.I hope all goes well for you,best wishes x

mammamia2004

my claim took 4 weeks and that was with them writing to dcotors etc.. so it prob depends on how long they take to get back to them!! i dont think they pay highter rate care for a child under 3 as they need constant care anyway hope this helps

2209leah

hello Bea89.... i am in a very similar situation my son is two and a half... he had encephalitis at christmas and we thought we were over it but six weeks later he had 9 more seizures in 24 hrs one lasting over 10 minutes. he is n ow on tegretol and beeing weened off epanutin which he was taking when he had the last breakthrough seizures. like you i cannot leave him unattended. he sleeps in our room now with his bed ajoined to ours as he has had fits in his sleep. i go to bed when he does to ensure his saftey. i cannot take my eyes off him for a second. as with your daughter since the medicine he has become a complete nightmare.... he is extreamely impulsive and has the "meltdowns" too. he has hurt himself quite extensively getting black eyes bruises even slit his wrist and had 11 stitches. smashed our 42 inch tv. and is quite brutal towards my 18 mth old and 10 year old. for a doctor to say this is not a disabilitie is crazy... it is and it is crippling the whole family atm. my partner is self employed and not on a good wage to start with but with the time off for hospital appts and emergencys we are getting further and further in debt. please let me know what the outcome of you dla application is as i shall be appling soon. if we are not eligable i am not sure what we will do as this silent illness deserves more understanding. you do not realise the implications of it untill you are there!! x