J saw the Neuro for the first time this week. I really like the man still. She is still reserving judgement though she is hopeful. I like that he seems to have common sense and doesn't rule things out.
He clearly ruled some things IN, and she wasn't thrilled with that. The shaking she does is stress related. But he agreed that it was likely that the stress could be caused by the untreated seizures and the feeling of being 'locked in her own mind'. He thought it was incredibly interesting that when the seizures were treated, the shaking and other stress related/conversion symptoms went away without further treatment. But if the seizures were not treated, no treatment for conversion worked even a little bit.
This did NOT tell the neuro that we saw bad therapists for conversion. It told him that likely the stress of the seizures was a major factor in the stress, and that J really needed someone to figure out what the heck was going on inside her brain but it was not going to be easy. He thinks that she has a combination of conversion and seizures. Every other neuro we have ever seen has said you could have seizures or you could have conversion but you absolutely could not possibly have both. We heard that over and over but no one could tell us why, and most got angry when I asked why.
He seemed to really LIKE the idea of a case that wasn't going to be a really easy fix. Something that was a puzzle to figure out, though he also said that most absence seizures were diagnosed by parents observing seizures not by EEGs. When he was told that hers were seen on an EEG and the original neuro wanted to use them to teach classes with, he was surprised because that is so rare. Especially when he learned we only had the EEG to rule out seizures before starting medications for inattentive ADHD.
She saw the neuro on Tues. We got the door unlocked and our phone was ringing to set up the MRI the doctor ordered. She had the first EEG on Wed and the MRI on Thurs. I don't know if another EEG or 2 will be needed, but we will see.
The doctor did give her the option of starting medications right away or waiting until tests were done and then starting medications. She chose to wait. In the past she started medications, it was a long wait to get approval and scheduling for the EEGs, and then the medications were working and she didn't have seizures. So then they stopped the medications. I truly hope and pray that this works well.
I want my daughter to get a life. We are also getting physical therapy scheduled for her knee.
He clearly ruled some things IN, and she wasn't thrilled with that. The shaking she does is stress related. But he agreed that it was likely that the stress could be caused by the untreated seizures and the feeling of being 'locked in her own mind'. He thought it was incredibly interesting that when the seizures were treated, the shaking and other stress related/conversion symptoms went away without further treatment. But if the seizures were not treated, no treatment for conversion worked even a little bit.
This did NOT tell the neuro that we saw bad therapists for conversion. It told him that likely the stress of the seizures was a major factor in the stress, and that J really needed someone to figure out what the heck was going on inside her brain but it was not going to be easy. He thinks that she has a combination of conversion and seizures. Every other neuro we have ever seen has said you could have seizures or you could have conversion but you absolutely could not possibly have both. We heard that over and over but no one could tell us why, and most got angry when I asked why.
He seemed to really LIKE the idea of a case that wasn't going to be a really easy fix. Something that was a puzzle to figure out, though he also said that most absence seizures were diagnosed by parents observing seizures not by EEGs. When he was told that hers were seen on an EEG and the original neuro wanted to use them to teach classes with, he was surprised because that is so rare. Especially when he learned we only had the EEG to rule out seizures before starting medications for inattentive ADHD.
She saw the neuro on Tues. We got the door unlocked and our phone was ringing to set up the MRI the doctor ordered. She had the first EEG on Wed and the MRI on Thurs. I don't know if another EEG or 2 will be needed, but we will see.
The doctor did give her the option of starting medications right away or waiting until tests were done and then starting medications. She chose to wait. In the past she started medications, it was a long wait to get approval and scheduling for the EEGs, and then the medications were working and she didn't have seizures. So then they stopped the medications. I truly hope and pray that this works well.
I want my daughter to get a life. We are also getting physical therapy scheduled for her knee.
