Silent Seizures

First of all, I am no doctor; I am a mom who busts my butt digging information out of people and the internet. Chelsea has a complex partial seizure disorder (more on that later). While I was talking to Chelsea’s neurologist and geneticist, both expressed the opinion that frequently, these types of seizures will go undiagnosed. That is so scary! The word “seizure” is scary, but I would rather be scared than have my kid continue to have seizures. So today’s blog will be:

1.       How do we diagnose a seizure disorder?

2.       What does a complex partial seizure look like?

3.       How do we treat it?

 

How do we diagnose a seizure disorder?

Short Answer:

1.       Ask teachers/ therapists if they see any warning signs
2.       Call pediatrician to recommend testing
3.       Call hospital to schedule test
4.       Child does EEG
5.       Neurologist visit to explain results

 

Long Answer/ Our Experience:

Ask your kiddo’s teachers and therapists if they have noticed any kind of seizure behavior- not necessarily shaking, but staring, “zoning out” or something similar. If you suspect that your child is having a seizure of any kind, call your doctor right away! Have the pediatrician call the hospital to set up an EEG for suspected abnormal brain activity. At least from my experience, my pediatrician does exactly what I ask, signs the forms I bring in, etc. YOU the mom know your child WAY better than the doctor and do WAY more research on your child’s disabilities.

Once the doctor calls in the order, you will probably need to call the hospital (or wherever the EEG will be taking place) and schedule. Now pull out that advocate hat and jam it onto your head! When I called in October, they said they could fit her in around January. I nicely but firmly said no, that wouldn’t work, and it needed to be sooner. They again said that the only openings available were in January, and that was what they had to offer. I expressed my concern that my daughter could be having seizures, and wanted this taken care of like, this week or next. After a few more rounds, they said that they did have an opening in two days, so would I like to take it. I think that maybe hospitals keep a couple spots open for psycho parents, and I’m happy to be that parent if it helps my daughter.

To prep for an EEG, we had to do sleep deprivation with Chelsea the night before. Her EEG was scheduled in the mid-morning, so we kept her awake until 11:30 the night before (just after a Halloween party- she was elated), then woke her up at 4:30. She usually sleeps about 11 hours each night, so she was tired! The hardest part was keeping her awake on the way to the hospital, but we managed. We took her back and a truly amazing nurse hooked her up to a bunch of wires and stuff (did I mention I am not a doctor?) while Chelsea royally freaked out. Once she was hooked up, they flashed lights of different frequencies at her, then dimmed all the lights, and she went right to sleep.

My husband and I were watching the monitor while she slept (it was just a 15-30 minute test), and I had no idea what a normal EEG was supposed to look like, but it wasn’t what was on the screen! Her brain wave activity was constantly all over. After the test was over, they said that they would send her results to the pediatrician and also to schedule with a neurologist to explain the results to me.

I called the pediatrician’s office every couple hours for the next day and a half, asking if they had the results yet. Finally they came in and said that they could only read the report to me, not interpret it. They sure enough read it to me, and not a single word made sense. Maybe “Chelsea” or “and”. So that afternoon, I drove down to the office, picked up a copy, and stayed up all night trying to figure it out.

Same old story the next day. I called to schedule with the neurologist to get the results interpreted by someone other than google, and said that there weren’t any availabilities until 2 months from then. So I kept them on the phone, saying again and again that my kid had abnormal results and I needed to talk to someone NOW. Turns out they had an availability at the end of the week. Wonderful. Note: ALWAYS advocate!!!!

We met with the neurologist, who was very nice and able to prescribe a medication to stop the seizures, and explain about seizures.

 

What does a complex partial seizure look like?

 

Before starting medication, Chelsea was having seizures 2-3 times every minute while awake, more while she was asleep. Some symptoms were:

·         Falling a lot. Chelsea would frequently run into things or fall, and I had attributed it to her poor muscle coordination and lack of ability to motor plan, but it turns out it was more than that

·         Losing focus. Chelsea would zone out for a second or two, then snap back. Her brain was essentially “rebooting” every 20-30 seconds

·         Being tired! Even until 4 ½, Chelsea was taking 2-3 hour naps every day and still sleeping hard at night. Seizures EXHAUST your brain completely, and the poor girl was all worn out!

·         Running into things. I vividly remember one time while we were at the library that Chelsea wanted to look at a book display set on some metal shelving. She started walking over to it, and kept walking right before she got there with a slightly vacant look on her face. Cue injury, screaming, and ugly looks. Yay!!!

 

How to we treat it?

Medication. No other answer I could find. The diet that is sometimes recommended for kids who don’t respond well for the medication is a ketone diet (like Atkins), and my Organic Chemistry teacher showed up in college how ketones eat brain tissue and break down your muscles, including your heart. He totally freaked me out about ketone diets, and I refuse to go on one or put my child on one. Plus Chelsea is casein-free (allergies), and the diet is heavy in dairy and other foods she is allergic to.