Let's talk about seizures

Parenting often takes you places where you never thought you would go. This is particularly true the more children you have as the different possibilities multiply exponentially. Then when you add adoption into the mix, well, all bets are off. In keeping with my plan to focus on the positives of life, I am choosing to look on it all as one great big adventure.

And where is the great adventure taking me this time? Into the land of parenting a child with seizures. We knew H. had a history of seizures when we accepted her file, we just didn't know what type or why she had them. When she came to us, she was on anti-seizure medicine and for the past three months we had never seen one.

In talking with the neurologist earlier this month, he believes that the syndrome which she has (Linear Nevus Sebaceous Syndrome) is what is causing seizures. Now, I'm a skeptic at heart, and there was a part of me which didn't really believe she had seizures. They were reported as absence seizures, lasting a very short time. Now, I have observed that when something is upsetting or doesn't go her way, she does have a tendency to freeze.  As in go to her happy place and disappear. This is K.'s preferred mode of dealing with negative emotions as well, so I am well-versed in it. It is not a seizure. Since no medical personnel had ever witnessed a seizure, I was inclined to take it all with a grain of salt, and after a long discussion with the neurologist, he agreed to decrease her medication.

Things were going fine until Tuesday morning. J. and I were upstairs getting dressed and the few children still at home this week were eating breakfast. And then we hear calls for Mommy and Daddy in tones that make you drop everything and run. Fast. H. had been sitting at the table eating breakfast, when her sisters noticed something was wrong. When they tried to get her attention and H. was unresponsive, they assumed that H. was choking. I logical conclusion. J. started to perform the Heimlich maneuver and I decided to sweep her mouth to see if I could dislodge anything. Except that her teeth were clenched. She was not choking, she was seizing, and upon closer look was still breathing. We laid her down on the floor and she came to in less than a minute. Frankly, J. and I were relieved it was just a seizure and she wasn't actually choking. I find the idea of choking far scarier. (The child who does not panic, also relaxed after hearing H. was not choking, the one who does, took a bit longer to recover.) There seemed to be no after effects of the seizure for H. No overwhelming fatigue or killer headache. That's good. She was just concerned that she was no longer sitting at the table eating her food.

I called the neurologist later that day and I can't tell you how thrilled I was at the response of the entire office. They were responsive and caring, provided immediate replies, and get this, when I was connected to his nurse, she knew who I was even though we had only been in once so far. Since this looks like a long term relationship, I am thrilled that I like them all and they are so responsive.

I will say, the whole experience was much less stressful than it would have been because I felt educated and prepared. I have been reading Seizures and Epilepsy in Childhood: A Parent's Guide by Freeman, Vining, and Pillas. I highly recommend it as a resource and I credit my overall calmness to the information I learned from it.

Since this is now part of my life, I feel the need to help do my part to educate the public about seizures, because a lot of the things I have learned are different than what I thought. So, did you know...

  • a person cannot swallow their tongue while seizing (or at all) and you should never put your fingers in their mouth?
  • seizures do not cause brain damage, but the underlying cause of the seizure may?
  • seizures can last for up to a half an hour and the person will not suffer any ill effects?
  • you do not need to call 911 for a person having a seizure and in fact it is not recommended? (This is true unless the seizure lasts for more than 30 minutes.)
  • the best thing you can do for a person having a seizure is to lay them down in a safe area and just wait?
  • seizures are far more disturbing for the person watching than for the person experiencing them? (They won't remember anything.)
  • there are many different types of seizures and not all are the tonic-clonic type (used to be called grand mal) where a person stiffens and then spasms?
Life's an adventure!


Sara said…
Two of our children have had seizures. We have learned that Vitamin D3 is also very good to help with preventing seizures. It might be something you can look into for H!
It's scary the first time - I remember Eli's first one. Praying for her!

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