My infant boy began having Myclonic Jerks (right shoulder lifting to meet right ear, his head tilts slightly as well) at 5.5 months of age, or at least this is when I began to notice them. I brought him to my family doc for a peek, and of course, DS didn't "jerk" while there. I then video-taped my child "jerking" and returned to his office 2 weeks later. My family doc told me that he is having "Myclonic Jerks" and I am now referred to a Ped. Neurologist, and apparently the wait list is extensive. *sigh* I am VERY worried, and my family doc will give me no indication as to the seriousness, or lack thereof of this "jerking". The jerking itself seems to occur spontaneously, but I have noticed shortly after waking, when tired, and when stimulated, especially with Mommy doing extensive tickling and giggling. My question is what is the eventual likely prognosis of such an event in an infants life? Should I expect full recovery with no lasting effects? Learning Disabilities? Possible ASD/Austim? Metal Retardation? In addition, is this a rare occurance? and what tests should I expect to be completed at the neurologist? I have done much "googling" on infants and myclonic jerks, and some sites are positive in outcome and others are down right dreadful. Mommy is naturally frightened. Incidently, the jerks occured often in the beginning, and now they are significantly reduced. Once I could see more than 25 in a 10 minute period, now perhaps 1-2 a day or less. He has just turned 6 months old today, and I have noticed on 2 occasions where he twitched and his eyes rolled when sleeping. Could this be seizure activity as well?
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.
It is difficult to tell from the description you provide as to whether or not your son's jerking is myoclonus or some other movement. Myoclonus can have many causes. The most benign cause is benign myoclonus of infancy, which is a jerking that occurs while sleepy or sleeping, or during sudden stimulation or excitement. Most patients do well without any implicatioons on development. other possibilities include enhanced startle response. As you mention, these could be seizures. Some children with epilepsy have normal development, others are delayed. This depends on the seizure severity, the type of seizures, and the cause.
You are definitely on the right track with plans for evaluation by a pediatric neurologist. In the evaluation of jerking, visualization is very important, so it is great that you videotaped these, and it is a good idea to take the video to the neurologist. If seizures need to be investigated, an EEG needs to be done. It may not show abnormalities if it is not done simultaneous to the jerks, or it may. Sometimes, prolonged EEG is required if there is a suspicion for seizures, and the jerks do not happen during a brief EEG. Other testing such as blood testing and brain imaging will depend on what the diagnosis or suspected diagnosis of the jerks is. If seizures are confirmed, evaluation by a pediatric epileptologist, if one is available in your area, would be beneficial as well.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
As you can tell by my several posts, I'm anxious. Another update: I now have an appointment with a Ped. Neuro for Sep 21!!! That is an Emergencey Appointment they tell me. What has become of our health system? Anyway, I am going off track. I cannot seem to find a pattern in these "jerks", sometimes he's sleepy (after just waking or about to drift off to sleep land), sometimes playing, sometimes physically engaged, but I have noticed that the jerks seem to be more forceful and more of them when he is chewing something (teething toys and even nursing)... although, he is 6 months old and teething, so he has something in his mouth frequently, so perhaps that is nothing. In addition, some days it may not happen at all, sometimes 1-4 times, and then out of the blue there could be an entire series of 15 or more in a row. They initially started on the right, and I now see them mostly on the left. His shoulder raises and his head tilts (ear meets shoulder), while his eyes are open, I'm not sure that he all there so to speak, but once "it" is over.. anywhere from 2 seconds to the most has been close to 10 seconds, but typically they are short, he continues doing what he was doing. I have on one occasion seen both shoulders rise at the same time.
Other Historical Information:
-1 Aunt and 1 cousin with Epilepsy (mother's side)
-Delivery was unevental and normal. One round of cervigel and I was in labour. Labour to delivery was 5 hours.
- 9lbs 2.5 ounces, jaundice day 2 (lights for 2 days)
- Sacral dimple noted and investigated and normal
- First round of vaccine 1.5 weeks prior to noticed onset
- no febrile seizures or any temperature noted
Just thought that I would post an update to this as I find myself wondering about others who have posted questions without the eventual outcome...
I have been to see 2 Neurologists armed with 6 videos of my son engaging in this myclonic episodes. At their peak he was having 100's a day and they always appeared in clusters and were favoured upon awakening or drowsiness. Luckily/ Or Unlucklily for me, depending on how you look at it, while I had each of my appointments with the doctors he was engaged in myclonis jerks the entire duration, so they got to see it on video and in real life. Ironically, a week after going to the doctors, the jerks have all but stopped, some days he has none, others 2-3 a day. The neurologist offically called it "Benign Infantile Spasms" and indicated that most children outgrow at at 2, latest 4. He also told me that they will likly get much worse before getting better. Given that he was already having 100's a day, I am hoping that was it's peak. I should also mention that he had a spontaneous improvement in the past as well, only to re-start the jerks with avengence a week or so later. To date, he is still having few or none daily. Crossing my fingers that it stays that way. As a precautionary measure, he will be getting an MRI and video EEG done next week. I hope that they can capture one jerk on the EEG just to see if indeed it is non-epileptic. I am praying that he has normal results. However, I am uncertain what if "normal" really means anything at 7 months of age. I am still very worried about neurological and developmental outcomes for my son.
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