- Posts: 2
× Members
change of circumstance
- toony
- Topic Author
- Offline
Less More
13 years 11 months ago #40429 by toony
change of circumstance was created by toony
My wife is epileptic and has mild to moderate brain damage,due to a change in her medication for her convulsions her gran mal seizures are reducing to petit mal seizures, she has just reached the fianl increase of her new medication and will have her old medication removed altogether.Although they have not removed her old medication I am weary as to whether or not the gran mal seizures may return.
The signs are good so far but she has had change in medication before with worse side effects, at one point she had carbamazepine toxicity and ataxia and was admited to hospital where say stayed for just over a week. So you can understand my concerns as to whether the final stages of removing the carbamazepine and fully introducing the new drug Levetiracetam, this is on a fairly high dosage of 1250mg mornibg and night, there were alot of associated side effects, i.e headaches dizzyspells. and tiredness,also uneven sleep patterns and menstral cycle
she still has the other associated conditions that relate to her mild to moderate brain damage
these include
learning difficulties
dizziness
gets confused easily, needs things to be strongly explained to her, and even then she will forget, as she has memory problems and behavioural problems, although the behavioural problems seem to be less since the carbamazipine was reduced, so the carbamazepine could have been a cause of a few related conditions.
what I want to know, do you tell DWP now, or wait till she is taken off her carbamazepine
And the horror stories you here about the benefit been taken away altogether.
And do you have to fill one of the new forms in
as for the atos interview or should I say inerigation, she is not capable of fully explaining her condition
The signs are good so far but she has had change in medication before with worse side effects, at one point she had carbamazepine toxicity and ataxia and was admited to hospital where say stayed for just over a week. So you can understand my concerns as to whether the final stages of removing the carbamazepine and fully introducing the new drug Levetiracetam, this is on a fairly high dosage of 1250mg mornibg and night, there were alot of associated side effects, i.e headaches dizzyspells. and tiredness,also uneven sleep patterns and menstral cycle
she still has the other associated conditions that relate to her mild to moderate brain damage
these include
learning difficulties
dizziness
gets confused easily, needs things to be strongly explained to her, and even then she will forget, as she has memory problems and behavioural problems, although the behavioural problems seem to be less since the carbamazipine was reduced, so the carbamazepine could have been a cause of a few related conditions.
what I want to know, do you tell DWP now, or wait till she is taken off her carbamazepine
And the horror stories you here about the benefit been taken away altogether.
And do you have to fill one of the new forms in
as for the atos interview or should I say inerigation, she is not capable of fully explaining her condition
Please Log in or Create an account to join the conversation.
- Survivor
13 years 11 months ago #40432 by Survivor
Replied by Survivor on topic Re: change of circumstance
I think you should wait until after the change of medication has been completed and after her seizures have settled down. It takes a while for the blood levels of new meds to stabilise and until they do, you won't know if this improvement is a flash in the pan or lasting.
However, do also consider whether this actually leads to a lower level of care needs. Fewer seizures may not of themselves mean that she is no longer entitled to the same rate of DLA if she still has the effects of her brain damage plus the side-effects of the Levetiracetam.
If you do decide that her needs have changed significantly, be specific about what her needs now are. You can use the guides to DLA to give you an idea of what the Decision Maker may want to take into consideration and to help you fill in a form if you are sent one.
If she is called for an Atos assessment, it would be perfectly proper for her to take someone such as yourself with her and for her companion to give the doctor/nurse information about her needs. Atos doctors are supposed to take into account what companions/advocates have to say.
However, do also consider whether this actually leads to a lower level of care needs. Fewer seizures may not of themselves mean that she is no longer entitled to the same rate of DLA if she still has the effects of her brain damage plus the side-effects of the Levetiracetam.
If you do decide that her needs have changed significantly, be specific about what her needs now are. You can use the guides to DLA to give you an idea of what the Decision Maker may want to take into consideration and to help you fill in a form if you are sent one.
If she is called for an Atos assessment, it would be perfectly proper for her to take someone such as yourself with her and for her companion to give the doctor/nurse information about her needs. Atos doctors are supposed to take into account what companions/advocates have to say.
Please Log in or Create an account to join the conversation.
- toony
- Topic Author
- Offline
Less More
- Posts: 2
13 years 11 months ago #40457 by toony
Replied by toony on topic Re: change of circumstance
a decision for the care component was based on the ammount of grand mal seizures she had and the fact she fell to the floor hard and doesnt have a sign she is having them, she had bad convulsions and was dissoriented for atleast 20mins after unless she slept it off
Do you have to fill in a full new form
(the new short one)
Do you have to fill in a full new form
(the new short one)
Please Log in or Create an account to join the conversation.
Moderators: Gordon, Gary, BIS, Catherine, Wendy, Kelly, greekqueen, peter, Katherine, Super User, Chris, David