06-22-2010, 10:34 AM
Join Date: Nov 2007
Location: Chesapeake, VA
Re: Benign Neonatal Sleep Myoclonus
I am glad that you shared your story! I have a similar one...
We just got home from a 24 hour stay at CHKD. (fortunately its local to us & our first choice ER)
Our son had "spasms" at 6 1/2 months old. He had about 10 of them in a 20 minute period. It was weird & different but we didn't know what it was.
We did some internet research & realized it might have been a seizure so we called his pedi. She was not concerned. She said it was probably a one-time thing & if it happened again to go to the ER.
Well, it's been 2 months, Luke is 8 months old & had another episode of "spasms".
They started @ 6:50 on Sunday (Father's Day), within the first 10 minutes he had more than 8 violent spasms. His arms jerked out from his body, his head goes back & he jerks a bit. Each spasm lasts MAYBE 4 seconds, most are shorter. As soon as we realized it was happening we jumped in the car & headed to CHKD.
We were taken back & seen quickly & by 9:30 we knew we'd be admitted with an MRI & EEG scheduled for the morning.
They put an IV in his tiny little hand that night & that was hard. They also had him on a pulse-oxometer. (sp?)
Luke's spasms lasted from 6:50-8:15 pm and he had more than 20 spasms in that time frame.
We didn't sleep too well but we did sleep. His EEG was "perfect". The neurologist came to see us in our room on Monday morning while Luke was having an episode. He saw the spasms.
At first he said, aww that, that's nothing. Luke was jerking his shoulders up and his head/chin down & towards the shoulder. TOTALLY NOT nothing...my baby doesn't NORMALLY do that!
He saw 1 or 2 of them & then said he thinks it is probably myoclonic jerks, which can be benign (what he suspects) or "terrible". He also said he would probably schedule a 2nd longer video EEG.
After his MRI came back "perfect" as well, the doctor changed his mind and said we could go home. He said he does not believe they are true seizures but rather benign myoclonic jerks. If they were seizures then there would be SOME evidence on the EEG or MRI.
We took our sleepy (he was sedated for the MRI) baby back to his room & waited to be discharged.
He's 100% normal today, no side effects of th spasms or sedation. But, I'm shaken. I am scared to death that they are something more serious, not benign, and leading to something life-altering. He's such a smart little boy and I love him to pieces (no matter what of course) that I'd hate for him to have some major disorder that early diagnosis could have treated.
Here are a couple links to his diagnosis: