Expect the Unexpected {Doctor’s Appointments, Worries and Another Scare}

And the story goes on…

If you have ever had a child with more than just a typical pediatrician appointment, you know how frustrating it is to get into a specialist, get down to “the bottom”, be an advocate for you’re child, and how depressing going to each appointment can be.  As I mentioned before

The weeks following the episode, I slept little and called the doctor often.  I thought it was absolutely insane and just unacceptable that it would a month before my baby would be seen at the neurologist in Lansing {where we live}.  I continually called the pediatricians office in hopes that they could push the appointment up or find another neurologist in order to be seen earlier.  Luckily we were able to get into the University of Michigan within two weeks of the episode.

We went to the University of Michigan in hopes of finding answers…

I can not say that is what happened at this appointment.  The neurologist came in, did not ask many questions from me, looked over the paperwork and data that was provided when he was in the hospital, and basically decided that she did not believe it was a seizure but a reaction to GERD {Gastroesophageal Reflux Disease}.  I was not convinced and was in disbelief that this was the cause of the lifeless like episode that he had a few weeks prior. She did set up another EEG while we were there and wanted to schedule a 3 to 5 day EEG in the future.  The doctor did not have the best bedside manner, but she had been in the field for many years so we went ahead and did as she said also knowing that within a few weeks we would also gain a second opinion from a neurologist at Michigan State University.

I left the University of Michigan again feeling helpless…

We still had little to no answers. I spent much of my time on the internet researching episodes that mimicked what occurred with Lincoln.  I came across many different diagnosis that came after YEARS of tests (years?!), hospital stays, and doctors visits.

Our 2nd opinion…

We FINALLY were able to get into a neurologist in the city where we live.  This doctor had a MUCH better bedside manner.  He looked over everything in Lincoln’s paperwork, asked me for my perspective and first-hand experience (although I was loosing the story since I decided to block it out).  He suggested setting up a 72-hour EEG which would have us at the hospital for at least 72-hours hoping to catch an episode.  He told me that the hospital would be calling us and we would go from there.  I went home feeling a little more listened to, a little more settled and actually excited to get this test done.

And then came another “episode”…

That VERY next night, Lincoln had another seizure-like “episode”.

To be continued…

Thanks for stopping by!


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