Can you have RLS and PLMD from birth? - Restless Legs Syn...

Restless Legs Syndrome

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Can you have RLS and PLMD from birth?

moovermaat profile image
25 Replies

My son has had aweful sleep since birth. He tosses and turns nonstop at bed time and at intervals throughout the night. If his movement is restricted in any way by bedding or cuddling he gets very upset. He almost panicks. He has been diagnosed as having night terrors, which he does have but the night terrors are only a small part of the problem in my eyes. I have been to the GP many many times but they have always said RLS and PLMD at his age is not really a thing. He was born frank breech. Which means his legs were up by his head and he was like this the whole pregnancy. I wonder if this could be a factor? He is now 2 and still wakes many times each night. We have had to pad the walls of his bed, ad he still bangs himself each night from so much movement. He falls out if bed most nights. He appears to be asleep when this happens. I share a room with him and from what i have observed it looks alot like restless legs and PLMD. Could it be possuble? He has been like tgis from birth!

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moovermaat
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25 Replies
ookla profile image
ookla

Yes. And when he's older, the doctor will say he just has "growing pains."

nightdancer profile image
nightdancer

RLS and PLMD certainly ARE a thing for kids. 70% of all RLS is genetic, so therefore a lot of us are born with the genes and they can be triggered. i strongly suggest a book by Dr. Judith Owens. She is a pediatrician that I met at an RLS conference in Boston, in 2009. The name of the book is escaping my memory, but look up her name on Amazon with "sleep disorders' and her stuff will pop up. Growing pains is the THING that is "not a thing", and it is too bad that doctors cannot get that idea out of their heads, for most of the time, and think a bit further into a diagnosis.

I had it from before I can remember, with my parents taking me to private Drs only to be told the same shite - growing pains.

Well I am not a kick in the arse off 50 and it seems like I'm still growing even though my body has got no bigger from I was about 18!

ookla profile image
ookla in reply to

Same here. :(

moovermaat profile image
moovermaat

Thanks for your insight.His doctor has already mentioned growing pains but said he was a little on the young side for them too.( Dont know how you can be too young to be growing though)

Does RLS and PLMD wake you up alot? His night is so disrupted and he is not wanting to be awake. He doesnt want to play. He cries, even if im there with him he cries in discomfort like he is frustrated to be awake.. Thanks so much for the recommendation of Judith Owens i will have a read. Its nice to know that my suspicions are a real possibility. I just want to get him the help he needs.

ookla profile image
ookla in reply tomoovermaat

When I was young, the only thing that helped was putting a pillow under my legs. When it got really bad, I would put the pillow between my legs and squeeze/clench it between my knees. To this day, I still sleep with a pillow down there. I had no idea everyone didn't do that until the first time a girl spent the night.

Docholiday1 profile image
Docholiday1

I was born with a cold. Otherwise normal birth think mum smoked not sure though. They were told it was good for nerves. we are all looking for triggers but no one really knows sorry.

macewan13 profile image
macewan13

Hello Moovermaat,

I have always had it. 2 of my children have it. Both say they have had it for as long as they remember. I first noticed it in my son when he was very young and had scarlet fever - trying to stretch out his legs and crying with frustration. This was long before he could talk.

Whether it was triggered by anything or not, I don't know.

You will probably know when he is old enough to describe his symptoms.

Good luck

moovermaat profile image
moovermaat

Thanks again for your replies. He has recently started asking me to rub his legs now he can talk a bit better. Does anyone have any suggestions on possible remedies etc. ? I have tried iron and magnezium and omega oils so far.

Joolsg profile image
Joolsg

Hi Moovermat,

I wonder if your son might benefit from some gentle cranial osteopathy? I remember some friends speaking highly of this when their children were babies to help with colic and sleep issues.

You mention that your son was born frank breech & has had sleep problems from birth. Maybe some spinal nerves were squeezed during the process ( I know spinal surgery and injury causes RLS in a lot of people) and that trauma is what caused his RLS. An osteopath might be able to do something.

Also, children's yoga- with gentle stretches of the back and legs before bed might help.

Massage will definitely help as well, so make some magnesium oil ( from Epsom salts mixed with warm baby oil) & massage his legs, feet and back after a warm bath every night.

I really hope you can help him get some restful sleep.

Madlegs1 profile image
Madlegs1 in reply toJoolsg

I was going to suggest this as well- if you can find a good practitioner- physical therapist . Must be experienced with children. I have come across some truly magical results.

Maybe your paediatric nurse or doctor will know of somebody.

Given the birth history- this is certainly worth following up.

All the very best.

I presume you've eliminated all possible triggers???

Cheers.

moovermaat profile image
moovermaat in reply toJoolsg

Thank you for your reply. Sadly I tried several sessions of cranio when he was young. I even went to a lady who has specific knowledge of breech. i hv e done Epsom salts and magnesium massage also

Joolsg profile image
Joolsg in reply tomoovermaat

Oh that is such a shame.

The doctors are useless. I can't believe they are still saying children cannot get RLS & PLMD. They used to say it was not possible for children to have MS but that's been proved very wrong now.

I really, really hope you find something that helps.

I am about 90% sure my youngest son has it. He complains a lot about the legs and is as fidgety as get out. I see him rubbing them occasionally but I tend to play it down in case he is feeding off my pain and discomfort.

He drinks tonic water occasionally, (too young for the Gin) and thinks that helps so its either placebo or maybe it is just cramps he has. All I know is I really don't want him to have this f**king condition and I pray it is just the ubiquitous growing pains.

Pedigree80 profile image
Pedigree80

My son is 3 1/2 and has been like this for pretty much always. As he has got older he has started saying that his legs hurt and / or itch. You can now see them twitching at night when he's going through a bad spell.

Our GP has been sympathetic and listened to us suggest RLS. He was sent for a blood test but this came back negative. We're really struggling to know what to do next.

Chriskong99 profile image
Chriskong99

Hi, my son had night terrors, from 18 months old, now 24, he still gets it and what you describe, I also witnessed. There was nothing I could do to console him, I just had to wait for it to end and le5 him settle. Very distressing.

The really bad part of these terrors settled when he was 4-5, but he is still all over the bed even falls out of bed at times.

He’s never mentioned restless legs and he knows I have them, I will ask him it will be interesting to know, I will feed back his reply.

Just to say he’s always been a very happy boy with a very driven positive attitude that doesn’t let anything phase him, hope that helps, I know how painful it is for you to see this.

moovermaat profile image
moovermaat in reply toChriskong99

Thanks for your reply. Id be very interested to hear what your son says.

My son is also such a happy chappy. We cant believe how he copes with such disrupted sleep. Its good to hear that it has not negativly affected your son, as in the end thats all that really matters.

DicCarlson profile image
DicCarlson

I recall the "growing pains" and also being treated for iron deficiency anemia, maybe age 7 or so. "In the United States, iron deficiency remains common with nine percent of toddlers between the ages of 12-36 months having inadequate iron stored in their bodies." dukehealth.org/blog/iron-de...

Hi! I’m so sorry to hear this. I’m wondering, have you taken him to an ENT or (maybe better yet) a sleep specialist? If not, I highly recommend it. I’m assuming you have to get a referal from your GP for this where you are. My 4-yr.-old nephew just saw an ENT last month, so it’s not unheard of for kids this young to to see these kind of doctors (just in case your GP says this).

Good luck!

moovermaat profile image
moovermaat in reply to

Thanks for your reply. We were finally reffered to community pediatrics after much nagging and they were the ones who diagnosed the night terrors. They said that if he did have RLS or PMLD a sleep study would not confirm it but instead he would tell me about it when he was a bit older and able to communicate more clearly.They also told me that you can only have a sleep study on the National Health if they suspect Epilepsy which they didnt think was likley with my son. I would love for him to have a sleep study though. Its just not offered here.

in reply tomoovermaat

I know that PLMD is only diagnosed through a sleep study, but RLS is diagnosed through verbal history. I know that he can’t articulate yet, but from your observations I would think that something could be done for the little guy. Having to pad the sides of the bed so he won’t hurt himself sounds dramatic enough to warrant some help. Or?

Pippins2 profile image
Pippins2 in reply tomoovermaat

Hi he needs a Neurologist as RLS is Neurological. If you message me where you live I may be able to recommend someone, although they are few and far between who have RLS expertise x

moovermaat profile image
moovermaat in reply toPippins2

We are in Gloucestershire in the UK.

I have literally begged for a sleep study. But i feel they dont take me seriously. I have a 4 month old son also and my 2 year old wakes many more times a night than my little one. Its not normal. Tonight he woke screaming at 9pm and again at 10:30 already. Bless him. Its so hard to watch.

Jess is right PLMD is diagnosed by having a sleep study and RLS by saying what your symptoms are, which he is too young to tell you that. And sleep studies ARE done in the UK for picking up on sleep apnea and PLMD. If they can do a sleep study Epilespy, then they can do it to see if he has PLMD.

Retren profile image
Retren

movermaat I sympathize with you it must be a helpless feeling to see your child with such discomfort who can,t articulate to you if you live in the US Cleveland clinic has a paediatric RLS division it might be helpful in any case to contact someone there who can advise you as to your options for help.Physicians have access all over in their field so don,t get disheartened I hope you can get help soon.

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