Daisypath - Vacation

Saturday, June 16, 2012

Our Eventful Thursday and Friday

Last Thursday started like a normal day. Around 3 pm Charles got up from his nap. Patrick was holding him and all of a sudden he started shaking all over and staring straight ahead. The shaking spells would last from 3-5 seconds a piece and then he would stop for 30 or so seconds and repeat. He did this about 8 times. I proceeded to call the doctor to see if they could work us in and they did. We spent about 2 hours at the doctor's office (4-6pm). Charles had to go through a throat swab, blood being drawn, and then his finger being pricked because they didn't get enough blood. He had 3 more episodes in the doctor's office before we left but of course not in front of the nurse or doctor. Our doctor wanted him to go to the hospital to be checked out. We were sent to Blank Children's Hospital in Des Moines.We ran home packed and left for Des Moines. We arrived around 8:30 pm and they observed him all night. The resident doctor saw about 3 episodes of what we were talking about. He thought small seizures. We went on to have a pretty much sleepless night. Every doctor that saw Charles and one of his episodes thought he was having small seizures.
Friday, we went through a battery of tests. Poor baby had to have an IV put in and they drew more blood. Then he had to be sedated for a 45 minute MRI. After the MRI we had to go be hooked up to an EEG (30 electrodes glued onto his head). He hated every minute of being put on the EEG and so did we. Within 15 minutes of having the EEG put on and us getting to the room the machine and video caught Charles have an episode. The Pediatric Neurologist stopped by saw the video and immediately told us what was going on with Charles. His diagnosis: Shuddering attacks. You may ask like we did what are shuddering attacks? Do we need to worry about them affecting his brain development? Will he always have them? Is there anything we can do to prevent them? You know a million and one questions. "Shuddering attacks: usually begin in infancy and are less common in childhood. These episodes of altered muscle tone often manifest as a rapid tremor of the head, shoulder, and truck reminiscent of a "shudder" or "shiver" from a chill. There may be stiffening, flexion, and elevation of the arms with a low-amplitude tremor. If seated, the child may lean in one direction or even fall. The child may stare, appear unaware of the surroundings and then promptly return to the task at hand. The episodes last a few seconds, and can occur multiple times a day. The spells often occur with feeding. or when the child is excited or distressed, suggesting they are a pattern of stimulus overflow in a young child. They never occur during sleep and virtually never when being held or cuddled.  The EEG during the spells is normal (Charles' EEG and MRI was normal).Neurologic and developmental examinations are also normal. The episodes may continue at lower frequency into the second half of the first decade and can, on rare occasions, cause the child to fall in the middle of activities such as playing ball. Occasionally, a family history of benign essential tremor exists, (we don't as far as we know have anyone in our family that has tremors) but the children themselves do not have a chronic tremor. The spells spontaneously resolve by the second decade without treatment." All of this information came from a medical journal titled: Nonepileptic paroxysmal disorders. Authors: Thien T. Nguyen, MD, PhD, Peter W. Kaplan, MB, FRCP, and Angus Wilfong, MD Section Editor: Douglas R Nordli, Jr, MD, and Deputy Editor: Janet L. Witerdink, MD (I just want to credit who I pure out copied). They do not change his mental capacity or IQ and he should continue to reach his milestones like he has so far (which he has been right on schedule with). Even though I know they do not harm him they still scare and bother me--even though they don't bother him. I have read about many other cases and Charles' sounds to be very mild in comparison. I am hopeful that he will grow out of them sooner than later. Please pray for us. We will go back in 3 weeks to see the Pediatric Neurologist in Des Monies for a follow up visit. 

He was a trooper. He was leaning over and laying his head on his stuffed giraffe. Patrick went to take a picture of him and he sat straight up and smiled. We are blessed with a precious baby boy and we are very thankful that he is okay.

Today he has been very calm and relaxed. He has had 6 episodes today: 2 after his morning bottle, 2 after his afternoon feeding, and 2 when he was excited while we were on Skype with my parents. This picture is of me doing crazy stuff with his hair since I had to use vegetable oil to get the glue out of his hair. I gave him various hair styles a comb over, spiked hair, and an Alfalfa do to name a few--having fun while getting out the glue. I guess that is everything and thanks for reading this really long post. I am very tired of hospitals and hope we don't have any more visits.

1 comment:

  1. Oh my gosh, Brooke! That is so scary!! I am so thankful that hopefully they won't cause any other problems...but it must be horrible having to watch those episodes. I wonder why they just now start appearing, and so many of them so frequently? We will be praying for yall and Charles. Love you, girl.

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