Sunday, November 24, 2013


The 3 month wait for the neurologist finally ended a week and a half ago.  Parker's head circumference hadn't changed for almost a year so we were being referred for testing.  He has no other specific symptoms that doctors are worried about.  We met with the neurologist, who was amazing!  I expected nothing less from a man who gives a lot of bad news for a living.  He was extremely supportive and encouraging.  We didn't have many questions because we don't really know what to ask.  The doctor did a basic exam and reviewed the files sent from Parker's initial evaluation.  He did agree that it would be a good idea to do some additional testing to make sure Parker's brain is growing and developing properly.  We were scheduled for an EEG and MRI.

Prior to this I knew little about EEGs.  Here is a quick excerpt from Wikipedia:

Electroencephalography (EEG) is the recording of electrical activity along the scalp. EEG measures voltage fluctuations resulting from ionic current flows within the neurons of the brain. In clinical contexts, EEG refers to the recording of the brain's spontaneous electrical activity.

A standard EEG is done with the patient lying still in a clinic for 20-40 minutes.  Overnight ones are also given for patients with sleep problems.  They are also used to test for seizures.  We have never experienced "episodes" of any sort.

We did an ambulatory EEG.  Parker has the leads hooked up at the clinic on Friday afternoon.  He had a backpack with the recording device that he had to carry with him for a full 24 hours.  It weighed over 2 lbs. (10% of his body weight) so I was not surprised he was tuckered out!)   I did a lot of research about ambulatory EEGs, but didn't find much.  The video below has pictures and clips from our experience.
We won't have any results for at least a week, maybe longer with the holiday.  I am a little worried that the data won't tell us anything.  Parker went through a lot of stress to do this test and it would be disheartening to know it wasn't worth it.  He has a few marks left from the leads and a "hickey" on his neck from removing some tape.  We have several more weeks before the MRI, that will be another adventure.  While I am eager to learn more about Parker, I am also yearning for the day when we will just have our regular therapy to worry about.

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