I have a 6yr old who was diagnosed with complex partial seizures at the age of three. After two years of control, he started having what we think are breakthrough seizures earlier this year (he is on Tegretol slow release, having been changed from the liquid in February). His dose has been changed a couple of times since he started on the tablet medication, to no avail
Is it common for this to happen? We are thinking that either he has become resistant to his meds, and perhaps needs a change either back to liquid or to another med, or that what we are seeing is in actual fact not true eliptiform seizures, and that he is displaying some form of anxiety related response to several bereavements and illnesses we have had as a family in the last couple of years.
I am trying to get to speak to someone about this, but to be honest we either have to speak to the consultant when he can gt time to call us back, or look up the internet. Support isn't great for children with epilepsy in our area, and I just wondered if anyone has a similar experience.
I had the exact opposite thing happen - I knew there was something wrong with my son. I took him to a doctor, who basically laughed at me and told me I had a fine healthy boy who most definitely did not have epilepsy.
Two days later my son went into status and was unconscious for 6 hours.
Sometimes, just sometimes as parents, the truth hurts too much for us to believe it - I was the last person who wanted her son labelled, but for his benefit I went to the very person who should have listened to me but who sadly didn't.
Fortunately my son is okay and his epilepsy is in actual fact idiopathic, although we are having some med issues at present following a period of stability. I wish sometimes doctors would take this sort of thing more seriously.
I hope your friends daughter is okay and gets the treatment most applicable to her.