Follow up expectations?

[knewton1801]

Should I expect follow-up on the neurologist's part or should I return to my family physician for follow-up?

After 2 seizures / hospitalizations within 2 months, then seeing a neurologist who prescribed dilantin and an EEG, I have had to take charge of my care.

Prior to the 3 day EEG, I called the doctor's asst. to ask if I should have blood work done. Then after no word on EEG results for two weeks, I played phone tag again with the asst. The pharmacist has had to call for refills two months in a row. What does a neurologist do?

What should I expect for follow-up care? Should I have periodic blood tests to check dilantin levels? Should I go back to my family physician for a refill prescription? What happens now?

[Meetz1064]

truth, YOU have to be your own best advocate.

Have you had an MRI to rule out any other abnormalities for the cause of the E? Did you get the results of the EEG yet? Have you gone back to the neurologist's office for the answers or not? Generally these have to be dealt with in the neurologist's office, they're not something that they will let the GP's deal with.

Look at it this way. The doctors have a large number of patients on their caseloads. And yes, they SHOULD remember to call you back, or their nurses should at least, that IS what you are paying them for. YOU are paying THEIR salary. But, they don't always do that. Soooooo, that said.......

Here's what I would do if I were you.

Call the neurologist's office, get a standing refill for several months. Also, get an appointment, with him/her if possible to go over the results of the EEG, and a list of questions that you might have ASAP. Then, go shopping for ANOTHER neurologist. DON'T be afraid to do this. It is perfectly normal, and within your rights as a patient. You do NOT have to tell your current neurologist's office that you are shopping for another neurologist, YET. Usually, a 2d opinion is appreciated. But be prepared to go thru testing again. Or for them to ask for your records. Or both.

In terms of bloodwork, yes, you should have it, AT LEAST every 6 months. Dilantin is processed through your liver, so the liver enzymes must be checked. Over time, you must also watch for side effects of Dilantin. Follow this link to know what some of them are, although the insert that comes with your bottle of medication should list them, too......

http://www.webmd.com/drugs/drug-1493...n+Kapseal+Oral

Hopefully I haven't confused you too much.

Take care,

Meetz

[Bernard]

Hi knewton, welcome to the forum.

You are doing good to bug the neurologist's office for blood work follow ups. Once you have titrated to the therapeutic dose of Dilantin, they likely won't bother you with blood tests unless you request them (at least, that's been our experience).

You *should* have the neurologist refill the prescription. Your regular doctor can refill it if the neurologist is not available though.

A couple threads you might enjoy reading if you are new to epilepsy:

Epilepsy 101 - Part FAQ, Part tips and advice

Proactive Prescription for Epilepsy

[tinasmom]

truth, YOU have to be your own best advocate.

Here's what I would do if I were you.

Call the neurologist's office, get a standing refill for several months. Also, get an appointment, with him/her if possible to go over the results of the EEG, and a list of questions that you might have ASAP. Then, go shopping for ANOTHER neurologist. DON'T be afraid to do this. It is perfectly normal, and within your rights as a patient. You do NOT have to tell your current neurologist's office that you are shopping for another neurologist, YET. Usually, a 2d opinion is appreciated. But be prepared to go thru testing again. Or for them to ask for your records. Or both.

I totally agree that you should look for another neurologist. We are currently on our third one. You should check to see if there are any Epileptologists in your area.

[skillefer]

Well, your neurologist should be ordering blood serum levels (making sure that your meds are in the therapeutic range) as well as confering with you as to any test results. Personally, I think you need to search for another neurologist. Sounds like yours isn't taking the time to answer your questions.

[morgan381]

Hi, knewton...if I were in your shoes, I'd start looking for a new neurologist. I've had problems with docs who don't take time to explain things or answer questions; I'm not sure if they expect you to blindly follow orders or if they assume you have all the info you need... Any way, if you can't get refills through your neurologist, your PCP should be able to write you a 'script. Sorry you're having so many troubles...