Benign Myocolonic Jerks, EEGS, and Jelly Bean, Oh My! – Part III

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Here’s the final update for my daughter, Jelly Bean’s, strange head jerking while she slept.If you’ve been dealing with a similar issue with your child, I hope this might shine a little light and offer some comfort for those stressful questions that have been plaguing you.

Now, just a quick reminder, I’m not a doctor by any means. I’m just reporting the experience that we had with my daughter. If your child is jerking his or her head as well, I would definitely schedule an appointment with the pediatrician so you can address all your personal questions. Also, I have blurred parts of the photos for safety reasons for my daughter. I wish more than anything that I could show the world just how beautiful she is, but I take her safety seriously, particularly on the internet.

We left off last time (Part II) with my daughter being scheduled for an EEG (electroencephalogram) the day after her appointment with the neurologist.She was just under six months old, and her sleeping was growing worse as she grew older.

We were off to a rough start after they forgot to show us our room (Funny story, our pastor came to pray with us before they began, and they showed him to our room before they showed us to our room.), but after we were finally escorted up, the hospital staff ran like a well-oiled machine.

Once we were shown to our room, Jelly Bean had to wear a little ankle band. Then they had me strip her naked so they could weigh her without even her diaper. The bed they showed us was more than a little frightening. It looked more like a cage you’d find in a zoo than a bed for a baby. Still, I liked the fact that as she was already in the habit of trying to climb out and off of everything we placed her in, she was unable to climb out of this crazy contraption!

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Next, they attached that crazy warrior’s braid looking thing to her head. Instead of one nice, neat cap, however, that’s actually just a “sock” that covers dozens of tiny electrodes that were attached to her head with a kind of glue. Attaching those was a nightmare. I helped hold her down while they stuck (literally) each electrode on one at a time, and each electrode was attached to a wire. The wires were then all gathered and pulled into the black sleeve and under the sock so she couldn’t pull them off.

It is truly terrible to hold your child down while she screams for you to help her. I had to keep reminding myself that this was for her good. There was no other way to make sure she wasn’t having seizures.

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If you could see her eyes in this picture here, they would still be full of the biggest tears you’ve ever seen.

The EEG itself doesn’t hurt at all. It simply monitors the child’s brain activity. The hard part is waiting for night to fall. Jelly Bean never jerked while she was awake (a good sign, they said). So we were stuck all day in a room with a tether that let us taker her about twelve feet from the cage, tops. The new toys and the TV helped keep her busy, but it’s hard to stay that stuck when you’re learning to crawl!

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Daddy came to visit, and brought us a new puppy. As you can see, both Daddy and the puppy were big hits.

When it finally came time to get her to sleep, I prayed desperately that she would sleep. As her night fits grew worse, so did getting her to sleep. By God’s grace, they had a rocking chair in the room, so we were able to rock and nurse like usual. Unfortunately, the many, many cords attached to the baby made life more than a bit complicated. She did fall asleep, however, and I was able to put her in the crib. Now came the important part.

According to Epilepsy.org, most nocturnal seizures occur while in light sleep, which was when she was doing most of her jerking. The nurse gave me a button that I was supposed to push whenever she began to jerk around. In addition to the EEG, they had video surveillance monitoring her all through the night, but by pushing the button, I was putting a little “bookmark” in the video so they could know where to jump to for the good stuff.

Jelly Bean had a habit of going in a three day cycle. One day, she would have terrible jerks. The next day would have mild jerks, and the third day would have nothing. This was a night of mild jerks, most of which occurred when she would shake her head back and forth, as though she were saying, “no,” repeatedly. After I’d hit the button about three or four times, one of the night nurses finally came in to tell me they had enough of those kinds of jerks to measure. (I hit the button twice more, however, for good measure.)

It was a long night. I barely slept four hours, but I was very, very grateful they were getting everything on video. If they didn’t get enough, they’d said, they might keep her another night. I felt torn. Did I really want to stay another night, keeping her in that tiny room for another 24 hours? Absolutely not. But this was our one chance to make sure they knew everything they could to determine whether she was having seizures or not. I wanted them to know everything before turning us loose.

Finally, the sun began to come up, and Jelly Bean awakened. The hospital staff couldn’t get enough of her sweet smiles, and I was just happy to see her smiles again at all. Cleaning her up and removing the electrodes was a bear (lots of screaming involved), but it meant they’d gotten enough footage! We were going home!

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Excuse the tired, no-make-up look. I was just thankful to have the night over with!

After waiting for hours, a group of five doctors and students came in. After exclaiming that they had the Gerber baby on their hands, the main doctor explained to me what I’d been waiting for. They had examined the EEG charts, and she was seizure free! They would go over the videos for good measure, they said, but nothing on the charts was abnormal. Praise God!

What Next?

The doctor didn’t really know what she was doing, but he knew it wasn’t seizures. “Some kids just have an over-active startle reflex,” I was told.

Since then, Jelly Bean’s jerking has all but stopped. The only lingering activity is right when she’s falling to sleep, sometimes she’ll still shake her head from side to side a few times, as though giving us an emphatic, “no.” Many babies with seizures will experience developmental delays, but not Jelly Bean! She said her first word at five months, was walking by nine months, and has now learned to fetch adults to do what she wants (like open doors to the outside…um, no, Kiddo), shakes her head no, and is determined to find the baby that must live behind the stand-up mirror. She’s thriving, praise be to God!

On a side note, she does still struggle with acid reflux, and is on Zantac for it. But she is almost completely sleep trained at night, and sleeps without the jerking once she’s out. It was a long, tiring road, but God answered our prayers, and our baby girl is safe.

If you’re struggling with your baby jerking throughout the night, definitely consult with your child’s pediatrician. It’s always better to be safe than sorry. If you’ve had experience with this kind of behavior, or questions, we’d love to hear from you in the comments below! Also, don’t forget, you can get free resources on neurological disorders, education, and encouragement (and a thank you gift!) by signing up for my weekly newsletter.

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