On the list of terrifying things that can happen to your child, slipping into a nonresponsive state is high. This week we experienced that with our daughter and I thought it would be worthwhile to tell you our story and to educate a little about what seizures are.

First of all, a seizure is short circuit in the brain. Nothing more. It’s not permanent, by definition it only lasts for short time.  They’re not GOOD for you but they won’t kill you or cause long term damage as long as they’re passing. In fact, anything under 5 minutes isn’t considered worth going to the ER unless it’s the first seizure or there’s some other complicating factor.

There are tons of kinds of seizures. Sometimes people have seizures that last only a few seconds and are very mild. The two major categories are:

  • Petit mal – basically staring spells. They usually last for less than 15 seconds and are often misdiagnosed
  • Grand mal – what most people think of when they think of seizures. Body shaking, eyes rolling, last for a few minutes.

Seizures can be caused by medications or backing off of medications. Children under 5 are prone to febrile seizures, which are caused by fevers. Usually these last less than 15 minutes and are like grand mal seizures.

Epilepsy is diagnosed when someone has recurrent seizures that are not brought on by some outside force (fever, medication, alcohol, etc.) Sometimes there is an issue in the brain that’s found to cause the seizures and sometimes not.

There are drugs that doctors use to prevent seizures, but there’s no magic bullet. The seizure medications available today don’t cause physical side effects which is great as there was a time that you had to choose between seizures and pancreatic, liver or kidney damage. But they do cause other effects – drowsiness, nausea and dizziness which can be problematic especially for children. They are also mood altering for many people, making them downright mean.

Some myths about seizures:

  • Tongue swallowing – NOT REAL. This is totally an urban legend.
  • Epilepsy = Mental retardation – NOT EVEN. Lots of people with super IQs have seizures.
  • Having one means you’ll have another – NOPE. A person could have one severe, grand mal seizure and never have another one.
  • Seizures are contagious – ARE YOU KIDDING ME?

But what do you do if someone has a grand mal seizure?

  • Keep them from hurting themselves. Make sure they don’t bump into anything, fall off of anything or get near the water.
  • Don’t call 911 if it lasts for less than 5 minutes.  Take them to the doctor once the seizure is over. If it does last longer than 5 minutes CALL 911!
  • Once the seizure is over, don’t overstimulate the person. This could cause another seizure.
  • Let the person rest. Seizures are exhausting and the person will probably sleep for hours.

This week our 7 month old little girl had a seizure. It was 11pm on a Tuesday night and was totally unexpected.

She’d been fussy earlier in the evening and had finally gone to sleep around 7pm, which would usually mean that she slept until after midnight. She woke up and was a little warm, but I was feeding her before I took her temperature because she was so upset. About halfway through her bottle, she got a little fussy so I pulled the bottle away and sat her up.  She got a far away look and became unresponsive. She’d had a seizure while we were in the NICU that was caused by a reaction to medication and my husband and I are both in special education, so we were pretty sure this was a seizure.

After a couple of minutes we called his parents to come stay with the boys while we went to the ER.  But the seizure kept going and getting worse. She started shaking and her eyes started rolling. That’s when we called 911. By the time they got there 5 minutes later, her lips were twitching and her tongue was moving so it looked like she was speed talking.  They worked on her in the ambulance in the back yard for 20 minutes before they could get it to stop, and that involved drilling into her lower leg bone to insert a line and administer medication to make it stop.  The whole thing lasted for at least 30 minutes.

Once we got to the ER, there was the usually flurry of blood draws and whatnot. She had another seizure around 1:30am (perhaps brought on by all of that activity) that lasted for 20 minutes before they were able to stop it with medication in the PICU. She was actually transported upstairs during the seizure because the PICU was so better equipped to handle it.

People enter into a kind of catatonic state after a grand mal. Often there’s a partial paralysis called Todd’s paralysis. Hermione had this on her right side for several hours and wasn’t herself even for short spells for two days.  She slept constantly and ate little, was fed by IV and her eyelids swelled shut from the excess IV fluid.

We’re pretty confident that Hermione’s seizure was febrile. On Wednesday morning I woke up in the PICU at 7am and found her to be a little warm. When the nurse took her temperature, it was 106. Yes, one hundred and six. As her neurologist said, if my temperature was that high I would have a seizure.

Still, this was our second experience with seizures, the other one being likely caused by a medication. So we’re told that she probably has a low threshold. She’s on one of the anti-seizure meds called Keppra.  She was on it before and we don’t like it, we find that she’s not responsive, generally in a bad mood and just not able to make developmental strides on it.  We’re giving her B6 daily to help mitigate the effects, but here’s hoping we’ll only be on it for a couple of months at most.

She’s home now. We never found a cause for the fever, we think it was viral. She’s on a low bit of oxygen (darnit we’d make it without home equipment until now!) but is doing well and we should be off of the O2 in a couple of days. Sleeping a lot but that’s the sickness and the Keppra.

At the end of the day, a seizure is terrifying but nothing to be afraid of. You look at your child and wonder if they’ll ever be them again, if you’ve lost them. One the the most amazing things that I’ve ever seen was her during this – she was still there, in her eyes. I could see here in there, not helpless but fighting it. She wanted it to stop and she was trying desperately.  She’s a tough kid.

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