Appointment Update:

Today we met with Dr. Mary Jane Lang and Dr. Charles Bean at DuPont Hospital For Children.  As soon as you walk through the doors of the hospital you can feel that this truly is a fresh new start.  A pleasant, happy to help staff greats you with a smile, they are happy to point you in the right direction rather than making you feel like you're burdening them.  Anyway, onto the important stuff!

We first met with the Physicians Assistant Dr. Mary Jane Lang.  She took a history, did a physical exam and interacted with Brayden.  When she was finished she called in the neurologist Dr. Charles Bean who went over the history trying to get more exact dates, lengths, and progression of Brayden's episodes.  They decided they wanted to try to trigger an episode by causing upset or frustration, which tends to be a trigger for Breath Holding Spells.  However, they were unsuccessful.  They tried getting some tests scheduled right away, but between trying to coordinate with cardiology, and trying to get an approval from the insurance company to do a 24 hr EEG right away (they denied this due to the fact that the last EEG Brayden had is over 4 mos old), what was supposed to be a 1 1/2 hr appointment, turned into an all day visit.  In the end we had to schedule to come back for the testing.

Dr.'s Thoughts: The frequency of Brayden's episodes is worrisome.  The fact that he goes stiff instantly rather than going limp and then stiff is indicative of a seizure.  Dr. Bean feels that we are not looking at a vagus nerve defect here, due to the fact that he applied pressure to a corroded nerve in the neck that would cause the vagus nerve to slow the heart beat, Brayden's heart beat remained steady...thank goodness!

Next Steps:  Schedule an appointment for a 1 1/2 hr EEG (Wednesday August 22 at 2:30pm, DuPont).  This is a sleep deprived study.  We did this before at CHOP (Children's Hospital of Philadelphia), but it was a 40 min EEG.  His results were normal.  Our next step after this would be to schedule a 24 hr EEG/Heart Monitoring/Video Monitoring.  This requires an overnight stay in the hospital.

My Thought's:  It's so nice to finally be heard an taken seriously!  One of the nicest things Dr. Bean did was turn to me and say, don't worry, you're not crazy.  Sounds simple, but unless you have been through what I went through with our previous Dr.'s, you wouldn't understand why these 5 words meant so much to me.  I feel confident that Brayden with now get the care and attention he deserves from people who still have the compassion that all Dr.'s should have.  As a mom, I don't want my son to have to undergo these tests which will be difficult for a child his age, however, at the same time my biggest fear has always been that something more serious may be getting missed.  I am thankful that we have gotten this far, and have found doctors who truly want to get to the bottom of this...just as we do!