Hi, I just wanted to get a bit of perspective from others with RLS as my 5 year old daughter almost certainly has it and having not really experienced it I find it hard to know what is normal for the condition (if there is a normal!). We had the nights pretty much under control, except the last two which have been bad again but I think that is prob food which has crept in over the last week of her brothers bday. My question was about the daytimes as that is mainly when she still gets it now. The main times it hits are first thing in the morning and then about mid afternoon, as well as almost anytime she needs to change clothing, so getting dressed in the morning makes her 'itchy' and whenever we need to get more layered up to go outside. She delays putting on socks until we need to go out as they make her the itchiest but then when it is time to go it's then an ordeal to get socks, shoes and coat on as it sets it off. When she gets it, it's to the point where she can't put her feet on the ground so I end up having to carry her to the car or wherever we need to go at least till it wears off a bit. I'm starting to think we are going to need to think of some type of scooter with a seat to pull her along if needed as I'm straining my back with all the carrying and she wouldn't want to sit in a buggy at nearly 6. I usually bring her scooter places now but sometimes she can't stand on it either. Shes a very bubbly active girl normally so its not like shes trying to avoid walking, she also doesn't seem to have the same erge to walk/run to get rid of the rls as I have heard other people mention, she will crawl along the ground in the house to avoid putting her feet down. I'm wondering if anybody else experiences this and has any advise or strategies they use? Many thanks!
Clothing/dressing child with rls - Restless Legs Syn...
Clothing/dressing child with rls
Hi, I would research Sensory processing disorder(hypersensitivity ) as this sounds very much u like my 4 year old grandaughter .Seamless comfort socks are available x
As Pippins has suggested.
Also kids at that age can get fads and meltdowns for no clear reason.
She may be sensitive to materials ( wool is often found guilty, but others can be a cause), washing powder can be an irritation ( we use non bio washing powder because it brought the kids out in a rash.)
This is not part of rls, but rather a sensory situation.
It may need specific expert support ,if the above suggestions don't help.
All the best.
This sounds really awful.
I wonder if you've sought professional help with this?
If not, then that would be the best idea.
You write it's almost certainly RLS, frankly, I'd say it's almost certainly NOT.
Thanks all, I know it does sound sensory but this is only really quite a recent thing which seems to have lingered from a particularly bad episode over Christmas of what we've far only been able to assume is rls as it's the only thing we've been able to find that seems to match it. Manerva, there are def things that confuse me, do you thinking the fact that she avoids being on her feet doesnt sound like rls? Or/and the clothes thing? She gets the sensations all over her body not just her legs. Brushing her hair also sets it off. We are waiting for a neurologist appoint in April. The things that seem to match rls are that she seems to get episodes of it where it gets worse over a few weeks or a month or 2, it never fully goes but it seems to come in these waves where when it's bad then we'll have about a month of it waking her up in the night and when it dies down it's more just in bed before sleep, first thing in the morning and then sometimes late afternoon/eve. Car journeys will also set it off, just knowing we're going to go in the car can make her start feeling it. I'm def open to the idea of it not being rls (even hoping, as i hate the idea of her having it for life). Of course when you feel they are suffering you natually make some allowances you wouldn't normally so there may have become some element of behaviour there, its hard to differentiate sometimes... Just hoping we get some kind of answer either way at this appoint!
My grandaughter who has sensory difficulties finds bedding difficult .It will be too "bumpy " , scratchy, not straight , itchy , too hot , "funny material " the list goes in .This causes her to be unsettled and kicking her legs around /kicking bedding off which could easily be mistaken for RLS so do consider this possibility .Finding hair brushed difficult is another very common problem of Sensory issues .I am not saying she doesnt have RLS but it could be hyersensitivity.x
NONE of that really sounds like RLS.
There are evidence based accepted criteria for RLS.. Anything else you may read or hear which doesn't refer to these may be misleading. Even the criteria are open to misinterpretation.
Some RLS sufferers say it comes in waves for them. This is not however considered as a diagnostic criteria.
The diagnostic criteria for RLS include.
1) An unpleasant sensation in the legs accompanied by the urge to move.
The unpleasant sensation happens spontaneously, it has nothing to with the sense of touch. It is felt inside the legs. Oversensitivity is not a diagmostic criteria.
2) The symptoms occur when relaxing, staying still or lying down.
3). They are relieved by moving.
4) They are worse at night and when trying to sleep.
5) All other explanations for the symptoms have been ruled out.
I realise a 5 year old might have limited verbal ability, but what does she say she feels? How does she describe it? Do she say she needs to move?. Does she seem unable to keep still, fidget or jerk her legs?
The urge to move is THE main characteristic of RLS.
RLS more often than not prevents people from getting to sleep at all. If they manage to get to sleep it's usually because they're on medication which enables that, but the RLS may wake them up later.
RLS mainly, as it's called, affects the legs. Some people get it in other places, i.e. arms, neck, shoulders or abdomen. Not the scalp, hands, feet, face etc. It also occurs in other parts of the body when people are taking medication that is failing to work.
It can happen in the morning, afternoon, but usually only in severe cases, or again when medication is failing. It is still usually worse at night.
"Just knowing we're going to go in the car" does not trigger RLS. Thid suggests a psychological element.
Criteria 5 is important, this requires examination by a doctor.
The symptoms have to be understood in the context of other symptoms, which might not appear as significant or as obvious.
Just to add that this has been going on for at least 2 years now although looking back at sleep and car journeys we suspect longer x
Maybe try a sensory compression sheet for bed -Amazon sell them £29.99 x
The symptoms you are describing don't seem to correspond to RLS. It's possible that your daughter has RLS but it appears there's something else going on that is unrelated. I'd suggest seeing a good pediatrician as well as the neurologist.
My son had a very similar episode for about 2 weeks. All shoes were hurting, uncomfortable, not tight enough. It was almost impossible to leave the house. Even for fun things. Whilst not an actual symptom of RLS it felt like it was linked but probably caused by some other issues - starting year 1 and the death of a relative. We spoke to someone about sensory issues. There's a good checklist you should be able to find. We also spoke to a GP who said that it was just a tantrum! As with most things RLS and children I'd try to be patient and make your lives easy as possible. For us it went after a couple of weeks but we're fully expecting something similar to happen again in the future
Weeniebean, have you investigated the possbility of ADHD?
Supersensitivity is common with ADHD/ADD, and RLS and ADD share some of the same genes. I think it is MEIS1 and/or BDBD9.
A significant percentage of sufferers have both, myself included.
I am supersensitive to touch, sound and smell. When I was a child wearing shoes was torture for me. I can wear them now, but the socks have to be a very particular sort.
In both ADHD/ADD and RLS the somatosensory cortex in the brain is significantly thinner than the norm, so there is a structural difference in the brain which accounts for this - the child cannot help it.
Check the child's ferritin levels - low iron in the brain can be present in both conditions.
Read these articles, and see if it makes sense.
Hypersensitivity is also a feature of Apergers which I suffer from.
Sounds like she has a very bad case of RLS. Have y'all talked to the doctor about all her terrible symptoms? I take a medication called Seroquel for mine. For some people the Seroquel works but for others it might make it worse. Luckily for me it worked cause if Seroquel works for the person then Seroquel is considered one of the best medications for RLS. Seroquel is also one of the best sleep aids out there. It helps you go to sleep and then it helps you stay asleep. It's kinda like a tranquilizer or something. It's very productive. You're gauranteed a normal amount of sleep every night, with no interruptions. In my opinion Seroquel is one of the best medications I have ever heard of or seen it taken myself. Hope this helps. Good luck!!!
Weeniebean, I’m so sorry to read about your daughter. I agree with most of the above comments. It really doesn’t sound like rls. I have worked with children who suffer from sensory disorders my entire adult life and your comments sure sound familiar. In addition to speaking with a medical professional, I’m sure specialists at her school can assist.
Hi Weeniebean, I remember that you wrote before, and it certainly sounded like RLS then - she was describing spiders under her skin etc if I'm right (correct me if I have the wrong person!). Just wanted to say that to everyone as I think the above are new / additional problems.
Hi, sorry for delayed response, I've been waiting for a moment I can sit and write properly! Thank you Boldgirl you remember correctly, she has periods of night time wakings with the 'itching' as she calls it and has described it like bugs under her skin. It was particularly bad over Christmas with her waking every night for a few weeks with inconsolable crying and thrashing about on the bed which could last for a few hours. It would take her ages to get to sleep in the first place and then the twitching would start sometime between 1 and 3am and it would gradually wake her up and then she'd be rubbing her skin and throwing her self around on the bed with it. She would get it a bit during the day before (this has been going on for 2 years now off and on) but it wasn't to any significant degree. We had started on iron supplements at the beginning of Dec and then from advice on here started cutting out sugar and processed food and also giving her magnesium baths and over that period the night times transformed and although she still finds it hard to get to sleep, those horrendous nights are for the most part gone. What has seemed to happen since the nights got better is that the days have got steadily worse to the point now that most mornings she wakes up and the itching starts, she doesn't really scratch her skin but anything that touches her irritates her, her hair bothers her and she often doesn't want her feet touching the floor. This tends to go after she's eaten breakfast and she'll be fine again until it's time to get dressed or go out somewhere and the same irritation will occur with clothes, coat, shoes. It seems like the itchy sensation gets exasibated by the touch of the clothing. Not to say its def not but she's never had any kind of sensory issues before, she doesn't have traits of asd or adhd, I've been a special needs teaching assistant so worked with children who had. This has all come about since the episode around Christmas. She's had episodes of the night time 'itching' on and off over the last two years and has also been getting it in the car for about that long. Its never been that bad in the daytime aside from the car until now. We still dont know if this is restless leg but had just been wanting to ask if this part sounded at all familiar to anyone else with RLS. Its never really been confined to her legs, she complains of it alot under her finger and toe nails and rubs her fingers together alot. She also gets it in her back and you can see her tensing and wriggling her shoulders to try and get rid of it but its the feet that really cause the problem when she can't walk, its getting quite debilitating. We are at a bit of a loss with this part of it other than we are planning to go dairy and gluten free to see if it makes a difference. Thanks everyone for you're responses. We'll try anything at this point!
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