Good news!!!Updated -New DLA claim done. Its been refused

rogerblack

24skins wrote: »

A I think a successful claim is much more likely if your daughter's medical care team thinks that this frequency of seizures is likely to continue long term.

A frequency of seizures that means needs exceeding the thresholds occur.
I think, personally, the above is comfortably above those thresholds at the moment, and even if the child were to improve significantly, they may still qualify.

24skins

rogerblack wrote: »

A frequency of seizures that means needs exceeding the thresholds occur.
I think, personally, the above is comfortably above those thresholds at the moment, and even if the child were to improve significantly, they may still qualify.

I agree, although to clarify I feel the medical team making it explicit in their evidence that they believe the condition will last 6 months+ would be more likely to lead to a successful claim.

As an aside, a friend of mine whose son had around 6 GM seizures a week for four years was awarded DLA (MRC, LRM) for a 12 month period, by the end of this period he had improved to the point that she didn't re-apply and now, just over a year later he has been seizure-free for six months and has been discharged from the neurologist and EN service. My son's seizures have remained about the same (2/3 a week with 'spikes' when he has a cold or other bug) for 10 years. It's a funny old disorder...

anj_S

24skins wrote: »

And is she in that state for two whole hours, during daytime? Regularly? Have you taken her up to A&E or contacted the EN while this is happening? I really think this needs to be seen by a medical professional - not trying to alarm, just as someone who has and works with children with epilepsy* I would say the length of time she's out of it is unusual; postictal phases vary wildly between children and it may well be that this is normal for your daughter, but equally it could be symptomatic of a sleep disorder or a reaction to midazolam (my son was so much worse post seizure while on mido).

*As an aside, how does she manage at school?

In terms of DLA for epilepsy a large sticking point is the fact that it is a fluctuating condition and for DLA claim to be succesful the care/mobility needs have to have existed for 3 months before and be expected to continue for six months after the claim was made.

I've read through this thread and your other & it appears she was diagnosed a few months before March '12 & then worsened very recently, this may be why she was refused (did you ask for the reason she was refused?). I think a successful claim is much more likely if your daughter's medical care team thinks that this frequency of seizures is likely to continue long term. It shouldn't matter which member of the team they get information from, it doesn't have to be lengthy, it just has to back up what you've up on the form.

Her seizures are mainly at night, she has been into hospital after them and they do think its just " her way of recovering".

Yes i also think the reason she was refused before was because her seizure history was always grand mal but every few weeks. Then about 4 months ago she started having these shorter frequent night seizures as well.

She is very bright and has been doing well at school but they have also noticed the tiredness and she has fallen asleep in class a number of times recently. I know the school medical coordinator will also write a letter for me backing this up, and also confirming the fact that some that on occasions she has gone into school mid morning as she has had such a bad night seizure, though we really try and keep this to a minimum.

24skins

anj_S wrote: »

Her seizures are mainly at night, she has been into hospital after them and they do think its just " her way of recovering".

Glad to hear it

Yes i also think the reason she was refused before was because her seizure history was always grand mal but every few weeks. Then about 4 months ago she started having these shorter frequent night seizures as well.

It could well be that her seizures weren't frequent enough at that time, but also may have been because the Decision Maker didn't feel there was enough evidence that her care needs would last the 6 months + (some children's fits are extremely well controlled after some fiddling with the medication and care needs drop, others will continue to have seizures regardless [this is sometimes called 'intractable' epilepsy])

She is very bright and has been doing well at school but they have also noticed the tiredness and she has fallen asleep in class a number of times recently. I know the school medical coordinator will also write a letter for me backing this up, and also confirming the fact that some that on occasions she has gone into school mid morning as she has had such a bad night seizure, though we really try and keep this to a minimum.

I'm always wary of giving education advice as I'm in Scotland where we don't have statements & SENCOs etc, but has the school offered extra help such as extra time for tests, work sent home for when she's better able to deal with it, or perhaps even a scribe to help if she's too knackered to write? These might sound a little OTT if she's bright and doing well, but tiredness/exhaustion can be a significant challenge for children in education and should be taken seriously.

wheezy

Unfortunately when my DD2 was suffering from 13 seizures a night on a regular basis it had meant that she is now mentally 5 and physically 10. We have changed medication frequently, not just once. In fact both girls have tried lots of medications to try and control seizures but we only found a wonder drug once! Please try different meds, it was a miracle for us once and worth every ounce of all the extra seizures. It really does happen sometimes:j

24skins wrote: »

Glad to hear it


It could well be that her seizures weren't frequent enough at that time, but also may have been because the Decision Maker didn't feel there was enough evidence that her care needs would last the 6 months + (some children's fits are extremely well controlled after some fiddling with the medication and care needs drop, others will continue to have seizures regardless [this is sometimes called 'intractable' epilepsy])




I'm always wary of giving education advice as I'm in Scotland where we don't have statements & SENCOs etc, but has the school offered extra help such as extra time for tests, work sent home for when she's better able to deal with it, or perhaps even a scribe to help if she's too knackered to write? These might sound a little OTT if she's bright and doing well, but tiredness/exhaustion can be a significant challenge for children in education and should be taken seriously.

anj_S

24skins wrote: »

I'm always wary of giving education advice as I'm in Scotland where we don't have statements & SENCOs etc, but has the school offered extra help such as extra time for tests, work sent home for when she's better able to deal with it, or perhaps even a scribe to help if she's too knackered to write? These might sound a little OTT if she's bright and doing well, but tiredness/exhaustion can be a significant challenge for children in education and should be taken seriously.

They havnt suggested extra time for academic tests or anything, but she only in year 7 so not really had many tests as yet. They did arrange for her to have extra time in her last music grade exam though. Guess is something to remember when exam times comes. She was in a musical theatre production at school a while back and they did organise that she went into school late each morning after it so that she could catch up on sleep and gave her stuff on what lessons she had missed.

anj_S

I dont believe it. This application for DLA has been refused. They reckon because her seizures are mainly at night she should not need intervention and is safe in bed!!!

I just feel like them cant have read the application form. Her specialist wrote a very detailed letter outlining the care she needs , even stating that the baby monitor and bed alarm had been strongly advised by the consultant paed neurologist at Great Ormond Street, who she is also under. This was because of the dangers of her vomitting.

But no, the pen pusher At the dla obviously knows far better than a professor of neurology about what my girl needs.

Can you tell im mad!!

tomtom256

anj_S wrote: »

"C also suffers from extreme tiredness so needs to be kept an eye on for this reason as well. For example she recently fell asleep in the middle of the day sitting on sofa whilst holding a boiling hot drink which spilled."

I am sorry but I cannot understand why she would be holding a boiling hot drink regardless of her condition. I would not give any child a boiling hot drink to hold.

As for the rest of it, as long as its true and shows a good range of help required the wording shouldn't be a problem.

EDIT: didn't realise it was an old thread. I would appeal again.

anj_S

tomtom256 wrote: »

I am sorry but I cannot understand why she would be holding a boiling hot drink regardless of her condition. I would not give any child a boiling hot drink drink to hold.

Shes a teenager now. So i dont think her having a cup of tea or hot chocolate is unreasonble.

anj_S

Well i phoned them today and asked for a reconsideration, and said i thought that the specialst nurses letter clearly evidenced that she did need care at night. They said....what letter????. erm, the one in same envelope as the applcation form!!!! They asked me to fax it, which ive done, do now i guess i need to wait again.