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-   -   Benign Neonatal Sleep Myoclonus (http://www.diaperswappers.com/forum/showthread.php?t=990188)

ao2swifey 05-19-2010 02:09 PM

Benign Neonatal Sleep Myoclonus
 
Hi.... my daughter was born August 16th, 2009. She was a very healthy happy baby. I took her home the next day. Hubby was deployed to the middle east. On the third day, August 19th, she started jerking in her sleep. It looked like a siezure. It only happened while she was sleeping. I took her to the ER. they said it was normal and it was called baby jerks. Went home. All through the night she continued to jerk/twitch. I took her back to the er. A different hospital. Again, its normal. Then I took her to her pediatrician. I had to see a PA. She said the same thing. 2 more days go by and it starts to get worst. After 2 more ER visits I call her pediatricians office and demand to she her pediatrician that evening. He looks at her and says something is wrong. By now it is day 7 of her life. I have had no sleep. I was a walking zombie. He calls the nearest childrens hospital and gets us in late that evening. It was only a 2 hours away. I take my son to DH's boss's house and drive to Charleston. We get there and they do test and an EEG. the EEG shows no seizure like activity. 2 days and more testing they conclude it is Benign Neonatal Sleep Myoclonus. here is the medical defenition:::

Benign neonatal sleep myoclonus (BNSM) is a selflimiting
disorder characterized by neonatal onset
myoclonic jerks during non-rapid eye movement
(NREM) sleep, and consistent cessation with arousal
with absence of concomitant electroencephalographic
findings.

They sent us home. I was terrified. They Navy would not send DH home because she was not in immediate danger. The neurologist said it would go away by 6 months. After a very long 4 months she no longer had the jerks. She is now a healty happy 9 month old sweet baby girl. there are no lasting effects from BNSM. I wanted to share my story incase anyone notices their baby having these signs. If so go to the nearest children's hospital or ER and ask for an EEG. You need this to determine that there is no seizure activity. I am attaching a video of Isabella during one of her episodes. Please PM me if you have any questions. Thanks for ready our story.

Kristi

http://www.youtube.com/watch?v=TWoocIK831E

mamaktee 05-19-2010 02:19 PM

Re: Benign Neonatal Sleep Myoclonus
 
Good for you mama for standing up for yourself when in your heart you knew something was up! SS it took so many trips/docs for someone to actually listen to you, but I am very happy to hear your sweet LO is doing well now :)

ao2swifey 05-19-2010 02:52 PM

Re: Benign Neonatal Sleep Myoclonus
 
Thanks mama!!! I went back to our 2 local hospitals to inform the docs that its not always normal. They were were happy I found out what was wrong with her and apologized for not listening to me. Your so right about knowing when something is wrong with your child. Every mama should demand the best from their child's doctor. Although sometimes docs can be intimidating. Thanks again.

AshleyLD 05-19-2010 05:28 PM

Re: Benign Neonatal Sleep Myoclonus
 
I watched your youtube video. that was def NOT NORMAL!

:hugs: for sticking to your guns!

ao2swifey 05-19-2010 06:54 PM

Re: Benign Neonatal Sleep Myoclonus
 
Thanks mama.

TeachinAuntie 06-22-2010 11:34 AM

Re: Benign Neonatal Sleep Myoclonus
 
Hugs! :hugs::hugs:

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:
http://www.ilae-epilepsy.org/ctf/ben...ic_infant.html

http://jcn.sagepub.com/cgi/content/abstract/16/2/109

Gattu 12-08-2012 12:16 PM

Re: Benign Neonatal Sleep Myoclonus
 
hi

after six yrs & after so many problems (because she is endometriosis problem)my elder sister gave birth a baby boy on 26th oct 2012.Now baby is 1 month but my sister & my family are under pressure of this same kind of decease. Please please give a proper solution on this problem because we dont want to start a medicines of baby lifetime.& we are very worried about baby's future.
we did also eeg, mri & all test....& all are normal,according to you its not a dangerous & harmful decease but when it happens baby cant sleep properly & he started cry.We are very worried about this problem. That baby is everything for us.


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