Neurologist

Today we travelled to Charlotte to see the neurologist. We have had a lot of problems with Briviact. Started normally with being tired but escalated quickly. Anxiety increased, she could feel her heart beating. The intensity of her seizures increased. She started feeling them when trying to wake up. Then she started having headaches every time she woke up. The side effects were effecting her schooling, she just couldn’t function. I talked with the nurse a couple of times telling her I was weaning her down. She said not to until they could start a new medication. It made no sense to me to continue it since it actually made her seizures worse  never had this problem before.

One day Larissa got out of bed and collapsed. Went back to bed and had a terrible seizure. I decided that I was going to wean her down. It is crazy to continue a medication that is obviously not working but is making life harder. A crying child every morning is not good. Headaches until after noon made normal life Impossible.

So when we went to the neurologist today I thought she wouldn’t be happy but she understood. We are trying a new medication. We are tired of these medications that are worse then the seizures.

Then I asked for more information on her seizures. She said frontal lobe nocturnal seizures. Nothing new to me but then she mentioned that maybe she should have genetic testing as this type of epilepsy could be genetic. That is new information to me. Anyone have these types of seizures? Anyone Struggle to find a medication that works? Larissa seems to have so many negative effects and still has the seizures. So frustrating.