June 3, 2011

Follow up: Grant's EEG

{This is a follow up to a previous post, Prayer Request: Grant's EEG.}

Well, I wish I could say the EEG went smoothly but it was a pretty rough ride. Confining a two and a half year old to a very small room with wires all over his head is never an easy deal but doing all that to a child with Fragile X Syndrome (intensely scared of new environments and new people) and Sensory Processing Disorder (does not like things on his head and needs certain kinds of input several times a day) is a recipe for STRESS. It was also stressful just knowing that our every move was being watched and recorded. I imagined myself being on a reality show. :)

I am also sad to report we did not capture a stare-off. I can't say that I am surprised. The stare-offs happen so quickly and sporadically and we were not in the normal environment in which they usually happen (they typically happen after Grant has been engaged in intense activity which was impossible to recreate in the hospital room).

There was another action Grant did that I have always questioned so I pushed the alarm button to mark the event on the recording. Pushing the alarm button is no small thing. A nurse flies into the room to try to observe the action in question and, as the nurse is rushing into the room, my job is to shout into the camera what I observe. I think I felt some of my hair fall out while all of that was happening (just kidding).

Fortunately, the neurologist reviewed brain activity at that time and didn't see anything abnormal (yeah!). So... we are still questioning the stare-offs and I have a feeling we will need to repeat the EEG experience in the future if we continue to see them. But for now the neurologist is going to review the brain activity over the 24 hours and give me a call to share her thoughts.

Grant is being prepped for the EEG electrodes. They first measure the head and mark the spots where they will be placed.

Then came a lot of glue and different smells and noises - and a lot of kicking and screaming from Grant. During this hour long process I had Grant's favorite DVD playing. It helped a little but Grant was very confused about what was going on and why Mommy was holding him down.

In true Grant fashion, he forgives and forgets quickly. After getting all the electrodes in place, they wrapped gauze around his head to keep him from pulling the wires out. It took Grant a couple of hours to get over the fact that something was on his head.

The gauze wrapped around Grant's head didn't last through the night but by the morning he was used to the wires.
 
This picture is to show the number of technicians, nurses, and doctors who worked with Grant. It was very involved. And, naturally, I educated everyone on Fragile X Syndrome during this whole process. Of course Grant's neurologist knew all about it but I made sure everyone else was up to speed on the latest info. :)

Thank you for your prayers. I know they are what got us through this time. Thank you also to my kind friend Lori Tolly who got up very early to be at our house at 6:00am on Wednesday to watch Wesley while Aaron had to go to work.

{Read the good news at Update: Grant's EEG Results}

1 comment:

  1. Thanks for the update. I was curious how things went. Sam had an MRI 6 months ago and it was not fun either.

    ReplyDelete

June 3, 2011

Follow up: Grant's EEG

{This is a follow up to a previous post, Prayer Request: Grant's EEG.}

Well, I wish I could say the EEG went smoothly but it was a pretty rough ride. Confining a two and a half year old to a very small room with wires all over his head is never an easy deal but doing all that to a child with Fragile X Syndrome (intensely scared of new environments and new people) and Sensory Processing Disorder (does not like things on his head and needs certain kinds of input several times a day) is a recipe for STRESS. It was also stressful just knowing that our every move was being watched and recorded. I imagined myself being on a reality show. :)

I am also sad to report we did not capture a stare-off. I can't say that I am surprised. The stare-offs happen so quickly and sporadically and we were not in the normal environment in which they usually happen (they typically happen after Grant has been engaged in intense activity which was impossible to recreate in the hospital room).

There was another action Grant did that I have always questioned so I pushed the alarm button to mark the event on the recording. Pushing the alarm button is no small thing. A nurse flies into the room to try to observe the action in question and, as the nurse is rushing into the room, my job is to shout into the camera what I observe. I think I felt some of my hair fall out while all of that was happening (just kidding).

Fortunately, the neurologist reviewed brain activity at that time and didn't see anything abnormal (yeah!). So... we are still questioning the stare-offs and I have a feeling we will need to repeat the EEG experience in the future if we continue to see them. But for now the neurologist is going to review the brain activity over the 24 hours and give me a call to share her thoughts.

Grant is being prepped for the EEG electrodes. They first measure the head and mark the spots where they will be placed.

Then came a lot of glue and different smells and noises - and a lot of kicking and screaming from Grant. During this hour long process I had Grant's favorite DVD playing. It helped a little but Grant was very confused about what was going on and why Mommy was holding him down.

In true Grant fashion, he forgives and forgets quickly. After getting all the electrodes in place, they wrapped gauze around his head to keep him from pulling the wires out. It took Grant a couple of hours to get over the fact that something was on his head.

The gauze wrapped around Grant's head didn't last through the night but by the morning he was used to the wires.
 
This picture is to show the number of technicians, nurses, and doctors who worked with Grant. It was very involved. And, naturally, I educated everyone on Fragile X Syndrome during this whole process. Of course Grant's neurologist knew all about it but I made sure everyone else was up to speed on the latest info. :)

Thank you for your prayers. I know they are what got us through this time. Thank you also to my kind friend Lori Tolly who got up very early to be at our house at 6:00am on Wednesday to watch Wesley while Aaron had to go to work.

{Read the good news at Update: Grant's EEG Results}


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1 comment:

  1. Thanks for the update. I was curious how things went. Sam had an MRI 6 months ago and it was not fun either.

    ReplyDelete