Sunday, August 18, 2013

The Guts to Make a Change

We saw a new neurologist last week. Of course I second guessed myself 1000 times, thinking maybe I was just being "crazy" for wanting a new doctor. Maybe I had expectations that were too great. Maybe people thought we deserved special treatment, instead of waiting like everyone else.

Can you tell I struggle with self-confidence?

In the end, it all worked out wonderfully. We saw a new doctor who listened. Who sat patiently as I asked many, many questions. Who made me feel like I was part of the decision making process for my son. Who understood how scary it was for us. Who didn't make us feel bad about wanting to be seen ASAP (like a sit down less than 3 weeks after the abnormal EEG, and second seizure. Awful to want that, I know). Who didn't downplay what was happening, just because there are those who have it worse (it's not a competition).

He explained the EEG B already had (something the other office had yet to do, even though I pretty much begged for answers), and told us he did in fact have a seizure disorder. Welcome to the world of Epilepsy.

He discussed medication with us, and gave us options. He told us he'd be more conservative with the medication B had been prescribed (the titration period), if we wanted to continue with it, but also supported us changing to something else (we did). He told us they would do blood testing, just to make sure there wasn't a genetic component to the seizures, and to rule out other medical causes. He gave us paperwork for school right then and there. He ordered another EEG so he could compare the two, and decide if B needs a MRI, or other tests.

It was just a totally different experience.

I don't think we're special. I don't think we rule the universe, and how dare a doctor not want to talk to us right away. I just think we are scared parents who deserve a doctor to answer their questions. Something everyone deserves. I am glad I had the guts to switch practices. That I was able to put away the "too nice" part of me, and do what was best for our family, especially B.

I'm hoping this is just the beginning of me feeling more comfortable speaking up, and advocating for our family, in all aspects of life. Sure, not everyone will like it, but I guess all I have to say to that is...too bad.


The little dude is worth it. We all are. 



2 comments:

  1. Yay for your amazing advocacy!!!! So proud of you for doing whatever it takes to get B high quality medical care. Seizures are SCARY! Been there, done that. Good luck tomorrow- oops I mean today. Caffeine being sent your way :-) and dreams of Rob Thomas...

    ReplyDelete
  2. Yay for your amazing advocacy!!!! So proud of you for doing whatever it takes to get B high quality medical care. Seizures are SCARY! Been there, done that. Good luck tomorrow- oops I mean today. Caffeine being sent your way :-) and dreams of Rob Thomas...

    ReplyDelete