I haven’t written about this yet, due to the personal nature of the issue, but now that things seem to be resolved, I want to share our little family’s latest adventure with neurology. Hopefully someone else dealing with these symptoms might find our story encouraging.
My daughter has never been a good sleeper, which comes as no surprise, considering my track record with sleep. Tics, anxiety, and a brain that never stops have always made sleep a little trickier for me to find than for other people.
When Jelly Bean was two months old, however, she did something that scared the living daylights of out of me. I was nursing her when she began to flail her arms and legs out while jerking her head back and forth. She even opened her eyes wide and looked terrified. I called out her name over and over again, but it was as if I wasn’t there. It took me about two minutes to get her calmed down again. Mommy, however, wasn’t as calm as baby when I finally put her to bed that night.
I called my own mommy directly after, and described the experience. Now, my mom is a teacher, and she not only stayed home with my brothers and myself for nine years, she also ran a home daycare and watched other people’s small children as well. Even she had never seen what Jelly Bean had done. Though we didn’t want to jump to conclusions, the possibility of seizures played in the backs of our minds.
Seizures. The word itself is terrifying to any parent. Brain damage, Autism, learning disabilities, the possibilities seem endless when all you can think about is, “Is my child having seizures?”
I called our pediatrician and to make appointment, which they were very quick to do once I mentioned the dreaded word seizures. We were seen by an LPN, who was confused enough by my symptom description that he left for quite a while to confer with someone else as we waited. I thought about all the questions he had asked me and tried to make sense of them.
Q: When she flails, are her limbs stiff so you can’t move them?
A: No. I could hold her arms and legs down, and they weren’t stiff.
Q: Did it happen in clusters?
A: No, it only happened once. She’s a very restless sleeper, however, and getting worse.
Q: Does she does this when she’s awake?
A: No, only when she’s asleep.
To be honest, she had been flailing out similarly since birth, just not with as much force as she had while I was holding her. I had always believed it to be part of the Startle (Moro) Reflex. What To Expect defines the Startle Reflex as the babies response to loud sounds, even his own crying, that makes the baby extend his arms and legs out, arching his back, before retracting. But as she was two months old, and her basic waking startle reflex had begun to fade, I wasn’t sure why it would suddenly return with a vengeance at eight weeks old.
The LPN finally came back and announced that they believed she had benign myoclonic jerks. Apparently, benign myoclonic jerks imitate West syndrome, an infantile seizure disorder. NORD, or the National Organization for Rare Disorders, describes West syndrome as:
West syndrome is a type of epilepsy characterized by spasms, abnormal brain wave patterns called hypsarrhythmia and sometimes mental retardation. The spasms that occur may range from violent jackknife or “salaam” movements where the whole body bends in half, or they may be no more than a mild twitching of the shoulder or eye changes.
You can see why her initial twitching terrified me. According to the nurse, however, myoclonic jerks are harmless, and Jelly Bean would grow out of them. Medscape’s article, Benign Neonatal Sleep Myoclonus, describes the jerks as,
Benign neonatal sleep myoclonus is characterized by myoclonic “lightninglike” jerks of the extremities that exclusively occur during sleep; it is not correlated with epilepsy.
He instructed us to keep an eye on her, but assured us that she would be fine.So we went home, and I was thankful.
Note: I need to point out that there’s a difference between Benign Neonatal Sleep Myoclonus and Myoclonic Seizures.
It Didn’t Go Away
Instead of getting better, however, her jerking continued to get worse as she neared four months old. Though she didn’t open her eyes anymore while she moved, she continued to thrash more and more in her sleep. She would:
- Flip her head from side to side repeatedly, particularly when trying to wake up or while she was sleeping.
- Arch and bend her back multiple times, back and forth.
- Bring her legs up in the air, then crashing down onto her bed.
- She struggled to wake up. I could call her name loudly, and the most she would do would be to groan and move her head back and forth.
As she continued to get worse, I mentioned it to our new pediatrician (Our TRIcare insurance had moved her to new doctor’s office.) during a routine appointment. It was hard to describe, as she only did the jerks at night and when she was asleep. In the office (of course), she was the happiest, smiliest thing you’d ever seen. The doctor told me to keep an eye on it, and that she didn’t think they were seizures, but to keep an eye on it and call back if it got worse.
Two weeks later, I called back because it did indeed get worse.
To Be Continued…
Do you have experience with Myoclonus? What about infantile seizures? I’d love for you to share your questions and comments in the Comment Box below. You never know if your information might help someone else down the road. Also, if you haven’t subscribed yet to my monthly newsletter, you can do so and receive free extra resources in your inbox. Also, (hint, hint), there may or may not be a free ebook on life with Tourettes being released sometime in the future and available for free download to my subscribers sometime in the future. Just a heads up! As always, thanks for reading!