We had the appointment with the neuro to go over J's eeg and see what is going on. He is so much better than the other ones we saw, in personality, in how he treats my child, and in his knowledge and ability to apply that knowledge. It went pretty well, so far at least.
I don't think he was prepared for the different types of spells she is having (spells is NOT my word, it is one he is using to get info about what is going on - if he asks for the seizure behavior he gets nothing from the parents or child) as there are 5 different ones. I don't know if they are related but I know that they happen. I had to keep adding info because he wanted to move on after the description of the first type of problem.
He did listen to all of the info, very carefully. He seemed to be worried that I would want to push him to add a lot of medications, do a lot of tests and fnd a "fix" for this right now. I was worried that if I didn't give him all the info then he would not be able to find the best aspect of the problem to treat first, or that what we didn't tell him would be the piece to give him the "Aha!" moment for whatever is going on.
He did rx neurontin because it will help with her migraines and he is hoping it will stop any seizure activity. He mentioned that it might be juvenile myoclonic epilepsy - first time a doctor has EVER given any hint that this is anything but conversion. He also says that in about 30% of patients with seizures there is comorbid conversion, and that conversion does NOT mean she isn't also having seizures. Knowing that it doesn't have to be either seizures or conversion, that it could be both was reassuring to both jess and I.
In addition to the neurontin and continuing her imitrex, the doctor is taking her off of both naproxen and tylenol. I have been very worried about those for quite some time. She was taking a HUGE amount of naproxen daily and a large dose of tylenol. Both were given under the doctor's orders and they were pretty much the only thing that helped the pain, but it just isn't healthy to take so much of either on for months. This is a big relief to me.
The doctor has also ordered another 5 day eeg to be done at the hospital next to his office. At least this will be a much shorter drive, LOL!
Thanks for all the support and good thoughts through all of this.
I don't think he was prepared for the different types of spells she is having (spells is NOT my word, it is one he is using to get info about what is going on - if he asks for the seizure behavior he gets nothing from the parents or child) as there are 5 different ones. I don't know if they are related but I know that they happen. I had to keep adding info because he wanted to move on after the description of the first type of problem.
He did listen to all of the info, very carefully. He seemed to be worried that I would want to push him to add a lot of medications, do a lot of tests and fnd a "fix" for this right now. I was worried that if I didn't give him all the info then he would not be able to find the best aspect of the problem to treat first, or that what we didn't tell him would be the piece to give him the "Aha!" moment for whatever is going on.
He did rx neurontin because it will help with her migraines and he is hoping it will stop any seizure activity. He mentioned that it might be juvenile myoclonic epilepsy - first time a doctor has EVER given any hint that this is anything but conversion. He also says that in about 30% of patients with seizures there is comorbid conversion, and that conversion does NOT mean she isn't also having seizures. Knowing that it doesn't have to be either seizures or conversion, that it could be both was reassuring to both jess and I.
In addition to the neurontin and continuing her imitrex, the doctor is taking her off of both naproxen and tylenol. I have been very worried about those for quite some time. She was taking a HUGE amount of naproxen daily and a large dose of tylenol. Both were given under the doctor's orders and they were pretty much the only thing that helped the pain, but it just isn't healthy to take so much of either on for months. This is a big relief to me.
The doctor has also ordered another 5 day eeg to be done at the hospital next to his office. At least this will be a much shorter drive, LOL!
Thanks for all the support and good thoughts through all of this.
