Grace for Rett » Grace's Life with Rett Syndrome

Grace’s Epilepsy: EEG Results

 

 

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I’m such a rubbish blogger! It’s been 4 months since I posted about Grace’s video telemetry EEG test. Naturally it took a couple months for doctors to read the results and come to some conclusions.

We saw our Neurologist a few weeks ago who explained the results in plain English and here are the basics:

  • We wanted to confirm that the episodes Grace was having were actually seizures and not something else. They are definitely seizures. It’s easy to wonder if you’re an overreacting parent but when your neurologist says, “Bottom line is Grace just has really bad epilepsy” then you know your gut was right.
  • Grace has two kinds of seizures: Focal seizures (those are the ones that look like this) and some bulk standard absence seizures where she just kind of goes blank for a minute.
  • The focal seizures are focused just in one area (I think in the front of her brain if I remember right). They don’t spread to the whole brain.
  • At the height of the week long EEG in the hospital, Grace had 29 seizures in one day. This is only because we took her off her meds for the study.
  • These seizures aren’t dangerous. They are only potentially dangerous if a seizure goes on for long enough to spread and then not end without rescue medications. But we’re talking like 30 minutes or something.
  • Before now, we’ve been pretty aggressive about stopping seizures within the first 8 minutes by administering Midazolam. Midazolam sedates Grace and pretty much derails the whole rest of the day. It can also cause respiratory depression which means her breathing gets so bad that she ends up being picked up in an ambulance.
  • Now that we know more about these seizures, we’re able to let her go 12-15 minutes before administering meds. The few seizures she’s had since then have ended themselves within this time frame without the use of meds.

Ultimately, of course, the goal is for her to not have any seizures at all and her medication (Lamotrigine) is very good at this. She’s only had 2 or 3 in the last 4 months and that was only because she was recovering from us taking her off her meds for a week.

So yea…overall very good information. Although it was a bumpy ride I’m very happy we did the week long study and I’d recommend it to any parent feeling a bit in the dark about their child’s epilepsy.

Scott L. Vannatter - August 27, 2015 - 6:50 pm

Glad to see her sweet face again. Wondered what had happened, but understand when the health of a child is at stake. All else can drop off the map.
Take care and I will continue prayers.
Scott

Justin Minton - August 28, 2015 - 4:12 am

Hi grace my little girl Kirsty is 25 now medicine will control your fits once they get right dose I follow retts since my girl was born and she means the world to me and grace u r a beautifull girl I wish u well Kirsty and her dad x

Shaeema Abrahams Ramson - May 28, 2016 - 10:24 am

My daughter is 3 years old also gets the seizures the way grace does I’ve learned alot at just reading this thank you

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