"We really need some help with our daughter's seizures"

About: Queen's Medical Centre / Neurology

(as a carer),

My daughter has been suffering for the last 4 months with seizures at nights. It is starting to get worse, it happens about 5 times at night and is starting to happen during the day. It happens every 2 hours. It’s really affecting our lives and we are always worried it is going to happen, she is in a lot of pain when this goes on.

After going several times to our local GP and visits to A&E we finally got an appointment to see the paediatrician, we then got an appointment to do an EEG, this came back negative. We were then offered an EEG with sleep deprivation.

We had this done and had an appointment in Feb 2010 with the paediatrician. We did not see the same paediatrician that we were booked to see, so we had to explain the problem of my daughter all over again, bearing in mind we have made records of every episode over the last 4 months.

The sleep EEG also came back negative. We have mentioned to the paediatrician that my daughter's right foot has dropped and she has no control and balance. While we were seing the nurse my daughter had an attack there but this is not enough, the consultant recommended that we video the seizure when she has one. It seems they do not believe us and we are just making this all up.

This is affecting our whole family's lives especially my daughter's life, she’s getting worse and the consultants don’t want to do anything for her now.

The next appointment we can get to see the pediatric consultant is in August. We will definitely not manage till then; we are worried my daughter will not be walking by then the way it is going.

My question is: why don’t they do some other tests eg neurological, it could be a spinal problem. We are really concerned as parents for the future of our child and the consultants don’t seem to want to help.

Is there anyone that can help us with this as this is our daughter who is only 9 years? The consultants have said that it is not epilepsy. What do we do next? We need some help.

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