My son is almost 2 and was diagnosed with left temporal lobe partial epilepsy at 4 months. He takes 8 ml of Phenobarb each night and his seizures have been very well controlled. His Pediatric Neuro stated that we will begin weaning him from the Phenobarb after our next appt. in Dec.
While the seizures have been under control, he began exhibiting some other symptoms in Feb. of this year, a couple of months after his 1st b-day. He would twitch during his sleep. The twitches mostly occurred in his hands/fingers (very fine, almost like little electrical impulses running down his fingers) and legs, but they would also affect his shoulders and head from time to time. One time, even the corner of his mouth twitched. The twitches would last for several mins, even up to an hour or more after going to sleep.
The twitching became much worse in June and I finally was able to record it on video. His Pediatric Neuro said it was Benign Neonatal Sleep Myoclonus and that while he fell outside of the “normal” age limits, he should eventually outgrow it. However, his doctor also stated that the head bobbing and twitching of the corner of his mouth wasn’t typical and to keep an eye on him.
Recently, I was holding him when he fell asleep and I noticed something that seemed very different from the description of Benign Neonatal Sleep Myoclonus. My son twitched during both non-REM sleep and REM sleep. Also, his twitching was not bi-lateral or synchronous at all. An arm/hand/finger might twitch for a few seconds and then the opposite leg would twitch. This goes on and on, occurring all over his body.
Do you have any ideas as to what this might be and if we should be concerned? I don’t believe he is having seizures, as when he happens to have a rather large twitch, he wakes himself up and the twitching stops for a few seconds. I read somewhere about something called Excessive Fragmented Myoclonus, but I can’t seem to find much information on this.
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to examine your son and obtain a history, I can not tell you what the exact cause of his symptoms is. However I will try to provide you with some useful information.
Myoclonus is sudden jerking due to sudden brief muscle contraction. It can involve any body part or the whole body. Myoclonus during sleep is common; it often occurs in the form of a sudden leg jerk. Often, it can involve the whole body. In children, there is an entity called benign myoclonus of infancy which is characterized by sudden jerks that involve both sides of the body more or less the same and usually involve the proximal muscles (arms/legs/trunk) rather than the fingers. In children with abnormal movements during sleep, possibilities include seizures, and sleep disorders. To distinguish between these, a polysomnogram (sleep study) is indicated. A sleep EEG during which the movements occurs can also be very helpful (and more practical, since it can be done over a few hours as an outpatient). The advantage of a sleep study is that it can help identify other disorders of sleep, which commonly occur in epilepsy patients, such as sleep apnea, which can also be associated with myoclonus, and can occur even in people who do not snore.
Discussion of your son's movements with his/her pediatric neurologist is recommended.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
My 2.5 year old son is exibiting the same twitching symptoms at night. They started immediately after he had a tonsil-adenoidectomy 2 months ago, and they are getting progressively worse at night. My pediatrician has been trying to reassure me that these movements can be normal. But, I can't explain why they started only after the surgery. Also, he is also showing signs that he may be having brief 5-10 second absence seizures. I'm not sure if you've noticed that in your child as well. I am pushing to get an appointment with a neurologist. I would love to keep in touch with you as we search for answers. Is there a way to do this via this website?
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