Story 26 (September 2002)
After the toxicity scare, we no longer had confidence in neurologist #1. The doctor’s responses to our questions seemed short and unfocused. The drug and dose changes that she recommended seemed random. Our chart of drug changes was full of changes in dosages and seizures.
We asked for a second opinion. This first neurologist sent a letter of introduction for Rose to another neurologist in a different city. The letter described Rose’s condition and drug trials and requested a second look at Rose’s possible treatments for the future. I bet neurologist #1 was happy to pass hot-potato Rose off for some re-enforcements. I appreciated that a second specialist was going to have input into Rose’s care.
Our first visit with neurologist #2 took hours. He was very thorough and reassuring. He wanted to nail down the type and source of these seizures. He felt that Rose had been prescribed too many drugs on too small doses to rule them out as an effective treatment. He wanted Rose in an Epilepsy Monitoring Unit(EMU) to get a video-EEG. He said he felt we had been yawing around the pond of treatment choices.
This was a relief for us. We felt the same way. I was like Rose had been part of a badly designed experiment with too many variables. We were now going to get some hard data we could use to get better results. We finally felt hopeful.
We felt like this doctor heard what we were saying and understood what we were feeling. We didn’t just want to try something new. We wanted what we did next to be the right choice, not just a random change. We needed all the cards to be put on the table. It was time. Rose needed to learn and grow, not fall and fail.
Seizure Mama speaks to parents:
No one doctor knows everything. Each has his/her own training and experiences. It is always good to get a second opinion. Do not be afraid to ask for one. It may be just what you need to get a better result. Your current, struggling physician may appreciate your nicely worded, respectful request.
Do not, however, bounce from one specialist to the next in hopes of finding a quick fix. Patience is needed when trying out drugs and doctors. Do not secretly sneak around because each physician needs to see all your child’s records to make informed decisions and avoid repeating failed treatments.
I would also advise getting a second opinion for any surgical procedure. Even though installing a VNS(vagus nerve stimulator) may be a simple procedure, the device is permanent. You are making decisions for your child. Do it carefully and wisely. Get as much input as is reasonable.