Frustrated with our doctors

mommyof4boys

Christopher has been having seizures since August.  The doctor said the first two were tonic clonic.  He has daily orrucances of spacing out, stiffineng up then shaking for 1-2 minutes.  We've been through coutnless EEG's.  When we were at the eye doctor she noticed his optic nerves were enlarged so she ordered an MRI.  He had it done last Monday and they said the results would be ready on Wednesday.  I called Wednesday, Friday, Monday and today.  Still no answers....today I got a "The doctor needs to call you.".  How do you think I'm going to respond with a reply like that?  I wish they would just let us know what is going on!  And, why is it that advocating for my child has become a full time job?

Bellisimo

Ugggh, I am so sorry you're going through this!  My Mom had to do the same for me when I was younger and having seizures and going through all the many tests that it took to diagnose me as "epileptic".  It can be quite puzzling because I never have had an abnormal EEG or MRI but sure as helll have had some seizures back to back.  I hope that you get to speak to the Dr. soon!  Neurologists frustrate me! 

bellrm22

I would keep calling no matter what they say back to you.  It is unfair and unprofessional that noone has called you back.

I am sorry that you have to go through this -- sometimes we are the only advocate for our children.

Good luck to you and your son.

lazysusan

Thank God your son has you.  My DS has had 3 seizures this year.  The last being on November 17th.  He had a tough time with this last one, and was hospitalized for a few days.  He's on meds now.  It's such a scary process.  I can relate, and very recently.  In the hospital it seemed like the docs weren't communicating with eachother, and it was up to DH and I to make sure everything was followed through on.  I hope you get your answers soon...