lost

[juliaasmom]

When my daughter was around 2 she began to have seizures and the doctors' said they were complex partial seizures and she went on dilantin and depakote then keppra and ended with trileptal and now on keppra and trileptal...seizures still are not controlled and she goes through cyles of increased seizures and memory loss and headaches and seizures seem to be getting more frequent and the keppra is terrible...and now they want to try lamitra or zonegran...every mediceine is so disruptive to her and do not control the seizures..and each change of pattern of her seizures gets more violent and i just don't know anymore ...I want to let her have normalcy and am just worried she barely sleeps a whole night without a series of at least four seizures and hardly a day passes without two or three...she is six years old...she is happy one minute over excited the next and then so sad she is sobbing the next...we have tried everything...should she get a more extensive mri or catscan...please help my jewels

[theasian]

with medication for seizures it is just trial and error because each person responds to medication differently. i'm on my 4th round which is working to a certain extent. you should definately push for more tests, maybe they can find the cause and reverse that. if not you should keep in mind that alot of children actually grow out of epilepsy as they get older. maybe you should ask the doctors if surgery is an option. every surgery has it's risks but in the long run it may be better for your daughter. take care

[grungema3]

Hello, there. I really feel for you. My grandson is 8 and, what we though were febrile are now known to be epilersy. He's also been diagnosed with Aspergers, high performing and brilliant in school but what a nightmare to manage. You sound like you live in the US. In the UK, in london, we have a specialist, famous children's hospital. They took my granson in for 1or 2 nights and monitored him with machines 24/7.
I am sure that you've taken advantage of all at your disposal for your daughter, but go and be assertive and tell your doctor you want another opinion and all tests repeated, maybe as an in-patient.
I am not an expert, in fact my daughter doesn't tell me much at all, but I would drive them mad until she is controlled and generally more stable.
I know how exhausting it is to have a sick child and the sleepless nights and then trudging round the hospitals. But make up your mind that they are not going to leave her like that and you are entitled to a complete re-exam and a fresh opinion.
Tell them she's not a lab experiment, this is your child, she has human rights, one of which is finding the correct treatment as she is now.
As kids grow things change and you are perfectly valid in requesting, indeed insisting, that this child needs the best that modern medicine has to help her, including a re-exam and re-assessment. good luckx