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

anj_S

I have been advised by the DLA that I should put in a new claim for my daughter as her condition has got so much worse since my orginal application which is now going to appeal.


I have spent 2 days on the form, but feel like they are asking the same question sometimes. Has anyone else felt that it is repetative at times??.

Here are some excerpts of what I have put, do you think they are about right, need to add more/less. Any opinions welcome


"C needs to have someone with her when she is outside incase of a seizure. if she were to have one she would need someone to make sure she was safe both during and after a seizure. With Grand mal seizures C vomits and is unaware of it, meaning she will not protect her own airway and therefore is at risk of inhaling her vomit which could be fatal. She has a long post seizure recovery period of up to 2 hours where she will just sleep and be very difficult to rouse. If this were to happen outside then she would not be capable of walking anywhere during the post seizure period and would need to be carried
C also suffers from extreme tiredness ( due to her medication and the seizure disturbed sleep) which affects her concentration so she also needs someone to make sure she is safe when she outside. For example on a recent bike ride she failed to notice a car at a junction and I had to grab her quickly. She is also prone to tripping over obstacles on paths etc, eg a step due to her tiredness and lack of concentration."


"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."

"C has seizure activity every night. Each night she has multiple episodes of seizures lasting 5-10 seconds where she will jerk, gulp, often leap up and scream and also occassionally gag. On a better night she will have 4 or so of these episodes. The worst night she has had was 18 episodes and the average is between 6 and 8 a night. We manage this by a mixture of cosleeping and using a monitor. Each time she has a seizure episode I need to check that she is safe and the seizure hasnt become a grand mal seizure. I also need to settle her back down as quickly as possible into proper sleep by stroking her hair and face. Getting her into proper sleep is important as it appears to increase the amount of time between seizures. Often she has lost her covers through the jerking or leaping up and so I need to replace these."
"When C does have a grandmal seizure she vomits and has a very prolonged (about 2 hours) post seizure phase. during this time she is unrousable and is unaware of any vomiting and therefore does not protect her airway. I therefore need to watch over for several hours and change the bedding etc due to the vomiting."


"C needs to be reminded each day to take her epilepsy medication. Without this prompt she would forget. Additionally she also has midazolam as an emergency drug should she have a prolonged seizure. She would need someone around during a seizure to administer this. I also have to make sure this is taken with us when we travel etc and stored correctly."

"C is very difficult to get up in a morning. I would estimate it is ten times more difficult to get C up than a child of the same age. She is very sleepy and it can take 40 minutes to wake her enough for her to understand that you want her to get up. Once she has actually been woken up she is then very tearful, upset, angry, shouting etc as she is so extremely tired. It can take another half an hour to actually get her physically to get as far getting washed and dressed. This occurs every morning she needs to get up whether it is a school day or a weekend when she has something planned that she wants to do like a day out or seeing one of her friends."

"At night C is quite fearful of going to sleep as she knows her seizures have increased. She wants someone to be with her until she has fallen firmly asleep"

Thanks for any help you can be

rogerblack

Indeed, it often is very repetitive.
I would perhaps add something explaining the consequences if she did forget to take the medication.

And perhaps, if it is correct, 'is unable to get to sleep without someone else there', rather than 'wants'.

The above would seem to support at least low-rate mobility, and high rate care.
Though of course what is decided is hard to say.
Good luck.

princessdon

Are there any instances you can add?

eg where you say she trips - the number of visits to A&E as a result, missing sports at school due to injury, the number of times she has missed school, been late for school, no of hospital visits etc.

I genuinely don't know how DLA works - and the ^^^ may not be relevant but it seems very subjective (as in it's your opinion) - would saying her consultant advises XXXXXX or during her regular hospital visit they recommend YYY for example so it's not only your opinion of her care needs but of a medical professional?

If this is covered elsewhere then ignore me (as i said I don't really know anything about it)

SuziQ

I have found the form very repetitive when I have completed it for me son. I agree with rogerblack about putting in consequences of what would happen if she had no-one with her, I remember putting in that for my son's forms.

I also remember having to estimate how much time I spent on each thing, and I always gave a range because it shouldn't be completed as a 'worst day' scenario. Good luck!

ETA-I got a lot of advice form the cerebra guidance for his form, have you looked at their site before completing the form?

anj_S

Thanks so much for all that.

Rogerblack I have added that if she didnt take her medication she would be at risk of a grand mal seizure, and changed the bit from wants to needs as indeed that is true.

princessdon I have also changed a bit so that instead of saying we do this, I have explained that her consultant has advised us to do this

suziQ - yes found the cerebra website already, and thank goodness someone else thinks its repetative.

anything else anyone, going to submit it over the weekend so any other suggestions very welcome

anj_S

Ps anyone any idea how long new applications are taking right now?

kingfisherblue

In addition to changing bedding, you presumably have to change your daughter's clothing when she vomits, As she is virtually unrousable after a grand mal, I would imagine you have to change her clothing for her. You might want to add this, if this is the case. If you need additional help because you need someone to hold her upright whilst you remove her top, put this in too.

Regarding her covers at night, you might want to put that she cannot replace her own covers as she is unrousable at that point, or that even if she is rousable, she has not got the strength, energy, or inclination to pull her duvet over herself. I know that you have implied this, but spelling out why you are doing this instead of your daughter just clarifies it.

As a safety issue, bike rides are probably now a thing of the past. You may want to add that following the incident you mention, she can no longer ride her bike as it is too dangerous.

Just as an additional point, you can apply for your daughter to have a Disabled Person's bus pass because she has epilepsy. Try your local council's website or your local transport provider (in Merseyside, it is Merseytravel, not the council. We are also able to use the pass on local trains and ferries)

wheezy

Really sorry your DD is having such a rough time. Both my children have epilepsy, one very severely. I would be very concerned about the tonic clonics and being completely unrousable for 2 hours afterwards and would bring this to the neurologists attention. Maybe a different combination of meds? I know how hard it is and how difficult it is to watch your child go through all the different and terrifying seizures xx

mazza111

anj_S wrote: »

Ps anyone any idea how long new applications are taking right now?

Got an award for dd last week after applying in April, but her GP was slow to respond, this was also a first claim.

anj_S

wheezy wrote: »

Really sorry your DD is having such a rough time. Both my children have epilepsy, one very severely. I would be very concerned about the tonic clonics and being completely unrousable for 2 hours afterwards and would bring this to the neurologists attention. Maybe a different combination of meds? I know how hard it is and how difficult it is to watch your child go through all the different and terrifying seizures xx

I know its horrible and my heart goesout to you if you have double that. Shesalways had a very long post seizure phase and consultant is aware, we have changed her meds once, and its being considered again. Which is dreadful as she always reacts so badly to changes in drugs.

anj_S

Hmm i think gps they are a pretty mixed bunch.

The DLA actually wrote to my daugthers consultant, who whilst very knowledgable is extremely overworked and sees many many children. The report she submitted took ages and was very brief and not much help to be honest which is why i think it was refused. I have written on this application to ask if they can contact the specialist epilepsy nurse (who was on mat leave at the time of my original application) who knows my daughter well. We speak at least once a week, more if my daughter has had a particulary bad night. Think she will be able to give them a really good idea of how it is.