Questions to ask

[momofthree]

Hi everyone, good morning. I was wondering if anyone with experience can give me some ideas about what to ask my son's doctor when we go to NYU on Monday. He had his VEEG and it was a horrific experience since they took him off of his Kepra, the good news is they saw lots of Grand Mal seizures and are able to diagnose him properly. The only thing I know is that it is not BRE, which was what was originally thought, unfortunately, and most likely TLE but his doc has not told me that, just the on call neurologist. I was told that he generalized so quickly that it was hard to see the start, or that the temperal lobe is buried so not easily seen with external leads. I am nervous about what I will be told, he is only 7 and has gone through so much. I have my list of questions but was curious if anyone else had any questions that a lay person such as myself may not think to ask. Thanks for your help, I am a scared mommy.

 

[Nakamova]

The EEG sounds tough -- it can't be easy to see your child having grand mal seizures. I don't know if this helps, but from personal experience I can tell you that those can be hard on the body, but less so on the mind, since there's no consciousness during them.

Some potential questions for the neurologist:
1. Does he agree with the on-call neurologist's assessment, or does he have a different take?
2. What are the next steps? Are there more tests indicated (such as MRI). Would there be a benefit to locating the exact area (in the temporal lobe or other lobes) where the seizures are originating?
3. Either way, does he think the results suggest that your son's treatment should change?
4. If so what are those changes and what are the plusses and minuses? What meds have the best track records and what are the potential side effects?
5. Does he think that diet can play a role (the ketogenic and other diets have shown success with pediatric epilepsy, including temporal lobe epilepsy)?
6. Does he think that neurofeedback can play a role?
7. Does he think that VNS might play a role?
8. Are there any developmental, cognitive, behavioral, and/or emotional issues to be aware of due to the seizures or any medications?
9. What sort of follow-up schedule will there be? How frequent will routine appointments be? How do you go about contacting him with questions in between appointments?
10. What would he do if it was his child?

Keep us posted on how things go.