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Benign Sleep Myoclonus / Hypnic Jerks

(9 Posts)
Tinymrscollings Wed 12-Sep-12 09:37:24

I wonder if anyone else has a child with this condition?

My 7 month old son was recently diagnosed with Benign Sleep Myoclonus. He makes a series of strange jerking motions with his arms as he drops off to sleep. I've been reassured that despite looking a bit alarming his condition is benign and I shouldn't be concerned unless he begins to exhibit other symptoms or the pattern of his jerks changes. It should pass in time, as he develops. We have a paediatric outpatients appointment in 6 weeks time when they expect him to be discharged.

I haven't been given any indication of how to manage his condition, which really affects his sleep. He's begun to nap very poorly and is always very tired. I feel a bit alone with it as my GP can only tell me what I can read on the Internet. Because his condition is benign they quite fairly aren't prepared to change his outpatients appointment to an earlier date. I don't have anyone I can call at the hospital and can't find a suitable organisation to consult.

I wondered if anyone else had experienced the condition and could give me some advice on how you managed it? it's a long shot as I can't find anything much about it anywhere, but I'd love some advice from the coal face!

ruby29 Wed 12-Sep-12 13:14:43

Hello! My DD had benign sleep myoclonus. We first noticed it when she was about 2 days old but didn't get a diagnosis until she was about 6 weeks. She had very prolonged periods of jerking which looked like seizures so was admitted to hospital and had a series of EEGs and an MRI.

Fortunately it was nothing more worrying and she grew out of it around 7-8 months. SHe wasn't a great sleeper either but not sure whether the jerking made her sleep any worse or not. I don't think there is much you can do about it. When she was tiny we used to swaddle her and she spent a lot of time napping in a sling.

She is 3 now and perfectly well. She does still twitch more than usual whilst she is sleeping I would say but nothing like the big jerks she used to do.

Hopefully your little one will soon outgrow it. Sorry not to be more help. We were so relieved it wasn't anything more serious at the time that I can't remember so much about it after she had the diagnosis.

Hope things settle down soon.

Tinymrscollings Wed 12-Sep-12 14:41:59

Ruby thank you so much for your reply! It's been a really scary time for us but I feel pretty confident in their diagnosis. I thought we'd probably just have to ride it out but it's really comforting to hear from someone who's experienced it first hand. He's too big to swaddle properly but I think I'll try wrapping a blanket round him.

Thanks again for letting me know I'm not the only person ever to experience this!

maxijazz Mon 24-Sep-12 11:57:03

Hi, I just took my 6.5mth old DS to the doctor this morning because he has these involuntary arm and leg jerks when he's tired. I went because me and DH just felt it wasn't 'normal' as it seems to distress him and it prevents him settling himself. He doesn't nap well in the day, only 30at a time and he wakes up crying because he hadn't had enough sleep. Once he's tired the jerks happen every time he's on his back.

I wonder if this is what DS has. It would make sense. Don't want to self diagnose though, OP what did you do to get a referral?

Thanks!

Tinymrscollings Tue 02-Oct-12 11:30:45

Sorry Maxi, only just saw your post.

your DS's jerks sound very similar to my son's. When the jerks initially came on we ended up calling NHS Direct at 11 on a Friday night and being referred to Paediatric A & E because they were concetned he was fitting rather than jerking. He stayed in for the weekend and they watched a couple of episodes - docs and nurses all reassured us that if he was fitting 'we would know about it' as it's much more dramatic and diagnosed the benign myoclonus. We ended up taking him back a week later as he got more and more tired and the frequency increased. they observed him again (pfb!) and the consultant assured me that so long as the jerks only happen when he's in a sleep situation (dropping off or very tired usually) then there's no cause for alarm.

We have been referred for an outpatient appointment as a matter of course but I don't think there's much they will do. DS had just gone through a huge growth spurt and started to roll and attempt sitting. Consultant seemed to think that it could just be a case of his body growing and his nervous system catching up.

6 weeks on and he still jerks but for now it's settled into a 1-2 times a day pattern and they seem to be tailing off.

Can you video an episode for the gp? If you do this they can look at it and it seems they can rule out the more sinister conditions like infantile spasms and epilepsies just by looking at how the jerks present themselves.

Our appointment is in a fortnight so I'll post again and let you know what they say. It is scary, though, hope you're ok? The doctor said to me I MUST NOT GOOGLE his symptoms any more as there are a number of really scary conditions which on the face of it are similar but that they can rule these out easily with observation. If he's otherwise healthy then they seem to be happy.

We have found that putting him down to sleep after 2 hours awake regardless of him seeming sleepy has helped control the condition. Sometimes I have to haul him out of bed 10 minutes later but he'll often have a little nap that seems to keep things under control.

That was a longer post than i'd intended but I really struggled to find any stories of a similar condition when DS was diagnosed so I'm recording it for others who might be frantically mnetting looking for reassurance!

LilyHB Thu 19-Feb-15 09:52:28

Hello! Very late to the party I know, my son was diagnosed with this after being admitted to A&E at 5 days, he had lumber punctures, CT scan and was then transferred to GOSH for an EEG where they diagnosed him. I thank the universe every day it turned out ok as West Middlesex hospital told us not to expect a good outcome, terrifying. There is so little info out there, I just wondered how your children have developed and what there sleep is like now? Would be great to hear from anyone with similar experience.

lholmes87 Tue 16-Jun-15 08:35:14

Hey all, my 12 week old has been diagnosed with this also. How did your LO's mange with there sleep. My boy can't last longer than half am hour on his back sleeping as the jerking eventually scares him out of his sleep. I have to usually allow him to sleep on his front to get a decent sleep. However now that he is 12 weeks, when I turn him on his front he starts pushing up his head now that he knows how do it. It's a nightmare. I feel like the paediatrician didn't really provide much info on how to deal with the symptoms. Just diagnose him and sent us home.

LilyKiwi Fri 10-Jul-15 12:55:21

Hi lholmes, my baby is now 11 months (I posted the post above yours) his sleep is much better but now and as far as I see he doesn't really jerk anymore, he seemed to grow out of it by about 5 months which seems quite common. Does your babies myoclonus get worse when loud music is on or if very warm?

nichole34 Fri 17-Feb-17 08:38:23

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

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