My 5 year old daughter has been suffering with restless leg symptoms for about 2 years. RLS has been the only thing we've been able to match the symptoms to but whenever we've mentioned it we were told it was something only older people get... Now reading about it further I realise this is not the case. It's been particularly bad for the past few weeks, not being able to get to sleep, waking in the night kicking and screaming, awake crying for hours. It's so distressing for all of us and we dread night times now. We've been back and forth to the drs over the last 2 years, had iron levels checked a while ago which came back as 18 the first time, we started supplementing her iron and they tested again last week and said they were now 35 (although symptoms have got worse) do these levels sounds significant? We've been told they are on the low end of normal but they don't seem concerned. We've been prescribed different antihistamines with no or worse affect. The last one phenergan gave her RLS symptoms during the day too, which I've now read can be the case. I took videos of the night times to show the Dr this week and he barely looked at them and then said theres nothing more they can do as its prob psychological (which he himself had said previously was 'a bit of a cop out' when they don't know what's wrong!!). I feel so angry after reading on here and realising it is very possibly what we've been saying all along. I'm going to go back and demand to be referred but I feel I need to be prepared. Are there any names of particular doctors we should be asking to see? We are in Hertfordshire so near to London. As it seems quite a specialist area I don't want to wait months to be seen by a neurologist who doesn't know enough about it. Should we be asking to be seen at Great Ormand Street since they specialise in children or are there other doctors who are more specialist in RLS? I'm already so grateful for the knowledge shared in this group, without which we would still be questioning ourselves.
Many thanks,
Irenie
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Weeniebean
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I am so sorry to read your posting. You appear to know much more than your doctor about RLS. Unfortunately it is often the case that doctors do not know much about it. This is a link from the RLS-UK website: rls-uk.org/rls-in-children These links are again taken from the Professional Resources link on the RLS-UK website static1.squarespace.com/sta... and static1.squarespace.com/sta...
If your doctor will not look at videos you have shown him of your daughter suffering, I doubt whether he will read this information either.
Adrian Williams, and Guy Leschziner, at Guys and St Thomas and Ray Chaudhuri at Kings appear to be recommended by those that have had appointments with them.
Thank you Kaarina, I will ask to be seen by one of those doctors. We've also now got lots of other ideas to try from this group such as diet which we are going to experiment with in the meantime. Obv we would rather try anything else other than meds. It would just be good to be seen by somebody who actually acknowledges what it is and has some suggestions for managing it. Thank you for your quick response.
You're welcome, Irenie, I really feel for you. Definitely much better to try everything else other than meds. Not sure if any drug would actually be offered for your little daughter. As you are now probably aware antihistamines often make symptoms much worse.
It may well be a good idea to find out if Great Ormond Street hospital has any RLS experts there.
There is often quite a wait to see these neurologists and if you could go private you may well be seen earlier.
It is encouraging to hear that finding this forum has helped you learn much more about RLS.
I am furious on your behalf Irene. Children can and do get RLS.
Anti histamines should be avoided as they make RLS 100% worse. Your doctor clearly thinks sedating your daughter is the answer. He sounds cruel and negligent. How can he ignore the video & then, because of his ignorance & lack of knowledge say it’s psychological? Outrageous!
You are right to check iron levels. There have been a few parents who have posted on here who have reported gentle iron supplements have really helped their child’s RLS.
It may be worth emailing Dr Buchfuhrer in California. He answers emails about RLS quickly & doesn’t charge. He is one of the world’s top RLS experts.
His email is
somno@verizon.net
He likes people to address him as Doctor and will not reply if the email is grammatically incorrect. A small foible but worth the effort to receive fast and excellent advice.
I would second Kaarina’s advice- Dr Guy Leschziner at Guy’s in London would be worth seeing. He does private as well as NHS referrals.
The best medical textbook on RLS ( Clinical Management of RLS, second edition) states that 0.5% of children suffer from RLS & management should begin with nonpharmalogical therapy. Anti histamines, anti nausea drugs, anti depressants, cough and cold meds should all be avoided. Total caffeine restriction ( including chocolate) and sugar is suggested due to its effect on RLS and sleep.
Iron supplements at lower doses, such as available in multi vitamins may be a gentler alternative for children.
The book does mention using dopamine agonists at very low doses but having experienced augmentation and withdrawal syndrome on these drugs I would never allow my child to take them as it would be too traumatic.
Hopefully multi vitamins with gentle iron, small magnesium doses and avoiding chocolate, sugar and any other dietary triggers will help.
If the RLS still disrupts sleep, a specialist may prescribe small doses of clonidine or clonazepam.
I really hope you can get a useful reply from Dr. Buchfuhrer and that you can see Dr Leschziner soon.
I'm very sorry to hear about your child. Must be awful. My heart goes out to you and your family. I am curious about diet. My RLS is not as bad as many here on this site, I'd rate it as a 5 on a scale of 1-10. But I have nearly beaten it (waking up now just once a night, or sometimes sleeping through the night). I've done it through diet and supplements. No caffeine. No processed foods. No dairy. No sugar. No artificial sweeteners. IF I have any of those things, my conditions worsen radically. Also I take iron and magnesium and potassium. I have no idea re: dosage for your child, (I may have been low on iron my entire life). While you are awaiting a doctor YOU CAN CONTROL diet, at least. And it may take 2-3 weeks before you see any changes in the RLS. You must be quite strict about the diet. At first it may be a challenge, but then it becomes easy. Hang in there
really sorry to read this. I had RLS as a child and my parents were told it was growing pains!! although my father had it too - was he still growing? GOSH sounds like a good option, they are more likely to take you seriously. I do hope your daughter gets the help she needs. Please keep us informed.
Thank you everybody, Joolsg that's exactly what happened, we had the worst few days and nights this week while she was having the phenergan. We stopped it and the daytime 'itchiness' (as she describes it) stopped and the nights have been so much better. Thank you for the email, I was going to ask how to get in touch with Dr Buchfuhrer as I had read that others had found him helpful. Thanks for the heads up too 😆! I'll check that book out, like you said we def want to avoid medication at this point. It's so encouraging to hear that diet can make such a difference as like you said KenBR at least that is something we can do something about right now. It also makes alot of sense as we find it's very come and go with the severity. Also we've seen a pattern where it seems to get worse during holidays so that would also make sense as we are generally eating less healthily! She's taking iron supplements from the dr and we have a magnesium spray that I bought but ive not been using it yet as im not actually sure how much to use. I will look into potassium thank you. Ive just looked this morning at the ingredients in her centrum kids multi vits and im wondering if she should even be taking them?! Does anyone have any advice on how to start with food and figuring out what might be triggering it? Is there a good system to use? We once did something similar for my husband's eczema where we were told to start with rice and build up but it was a long time ago... Madlegs1 it sounds like a minefield and yes its prob some thing/things she really loves 😫. I would never have thought some of those things could be an issue so it's going to be interesting! Luckily she's not too fussy and eats fruit and (some) veg! I've heard it can present slightly different in children. It started off in her feet but very quickly she started to describe it as being everywhere, she kicks her legs but also alot of the time rubs her fingers together and wants us to scratch her back, we ask her all the time where it is and she always said everywhere. She jerks around on the bed kicking and contorting her shoulders, writhing around to try and get some relief. This is what threw us off thinking RLS for a long time as it matched in every way except that it wasnt confined to her legs so didn't quite match the mainstream internet definitions. She also sometimes gets it during the day although looking back I now wonder whether those times were related to having antihistamines... so much to ponder but I feel so much more hopeful after all this advice, thank you so much.
Weeniebean, it may be difficult to find the exact diet trigger. RLS is complex and so are our bodies (duh, sorry to be so obvious). But it is true. And we have been taught too many times for too many ailments that there is one magic pill or one evil cause. While that may be proven someday for RLS, I approach it as more of hologram, or rather...many things contribute and bring us to a threshold and once we cross it, RLS acts up worse (for me anyway, with the RLS I have). With your child I would seriously consider the dietary approach I noted, while you are learning about dosage for the supplements. Indeed the Holidays can be worse. Sugar, sugar, sugar. I once ate a few cookies on vacation (thought I "deserved it" since I was on vacation) and just an hour later my RLS went crazy. I have learned that there is no moderation re: sugar, caffeine etc. and I have learned to accept that there may be a few tiny triggers working in concert to push me over the RLS threshold into twitching legs, and sleepless nights.
Thanks KenBR, do you find it takes a certain number of days for something like sugar to work it's way out of your system? I made sure to not give her anything sugary or processed yday, she ate banana and we squeezed oranges for breakfast, scrambled eggs on toast for lunch and then pork chop/potatoes/broccoli for dinner. I had everything crossed that she'd sleep better but she still woke up in the night itchy. I realise there could be many more factors contributing but just wondered how long irritants can stay in the body for?
It is soooo frustrating that results aren't happening quickly.
This is going to be a slow process.
If she is super sensitive to more than a few substances, it is going to be difficult to isolate any one.
For myself, looking at that lovely diet, I know that I would have to be wary of the oranges ( the sprays on commercial oranges is pretty awful stuff) also I tend to avoid porkunless it is home produced. ( There tend to be some additives in the rearing and production process, as far as I can make out-- but can't isolate, anyway, pork can keep me awake, so I just avoid it😧)
I'm beginning to wonder whether there are environmental factors at play here? Maybe look at washing powders( we just use Non bio products) or soaps/ shampoos and so on.
I'm sounding like some enviro warrior-- but I'm really quite normal-- I just have to keep a forensic eye on what I take in.
Last night my daughter glazed her ham-- it was delicious ( though I normally avoid ham like the plague, but I also have to be polite😝,-- anyway -- I had the heedgy jeebies in the middle of the night and mentioned to my daughtee. She said" oh, I used a bought packet of glaze" That was enough-- it would have been full of msg. Mystery.
solved 🤫
I'll shut up for now, and let you get on with your detective work.
How absolutely awful for you all & especially your daughter. I can’t imagine having what I have now as a child - just had a little bit occasionally.
I think if possible I would avoid treatment as the effect wears off. Prevention is likely the key with all these additives as mentioned by others in foods. Everything as natural & home made as possible if possible. I find stock cubes even a big trigger.
I am concerned about the advice about supplements eg potassium & magnesium for children. It is a really specialise field & they have small bodies & their handling of chemicals is different to adults. Iron is the exception as long as it is kept an eye on and children’s doses are used.
I was a GP & would never advise other supplements for kids unless professionally directed.
Our oath on graduation begins ‘1st do no harm ‘ and we should all stick to that.
That said drs suggesting antihistamines are making it worse.
Thanks Alison7 I've heard stock cubes mentioned a few times now! Prob one to steer clear of, who knew! As youve been a GP do you know whether we can request specifically to be referred to GOSH?
Hi, sorry I don’t know. I think it depends on the region & the health board’s policy on cross regional referrals. I also worked in scotland which was different.
If you can try to research where the specialists are.
The main issue I’m sure will be prevention if at all possible as most of the treatments effect wears off, have side effects & may not have a license for children anyway.
I’ve just restarted pregabalin which is having a slightly beneficial effect. I was gung ho the other day & succumbed to some bought blueberry muffins & had the most awful night - no doubt full of the various agents someone recently wrote about, msg etc. If you find the dietary triggers for your daughter of which may be several then no other treatment may be required.
That said children need a good diet for growth so specialist referral to a dietician may be wise.
But good old fashioned mixed home cooking from way back before additives may well help.
Thanks, I'll do a bit more research. I def won't be seeking any meds. It would just be good to speak to a specialist to know what levels of supplements she needs to be taking but yes maybe dietician, I was just wondering if they would be clued up regarding the specific requirements for RLS?
I'm not sure if a dietician will be clued up about RLS - though many 'paramedicals' have a huge amount of expertise and knowledge which can be not acknowledged by other professionals. But what I was thinking was more that they may be more able to advise on the best way to go about excluding things to try to solve the puzzle, and also what may need to be 'added back' as supplements to avoid any nutritional deficiencies for a growing child either during the exclusion process or once any culprits have been identified, and also what is safe to supplement with as per suggestions on this forum
Thanks Arkangel, I really feel for anyone whos been living with it for so long 😞. Her brother had what we assumed were growing pains around the same age but very infrequently and only over the space of a couple of years. He described it as pins and needles but she's always been adamant when we ask her that it's not like pins and needles and describes it as itching. Theres never been anything on her skin and she's sometimes said it feels like spiders under her skin. It's mainly when she's in bed, during the night or in the car so it really matches everything to do with RLS except the all over body part. Does anyone find that they can be distracted from it as talking to her, playing with her, watching something can seem to distract her from it sometimes when it's not TOO bad and generally when shes going to bed or in the car. If it's a night time waking we usually need to get her up, sometimes a trip to the toilet will suffice but if it's worse then she wont be able to put her feet on the floor, we might have to carry her around while she's screaming/crying. It could last a few hours, we have been resisting using screens to distract her as much as poss BUT they do help bring her out of it when she's beside herself. She seems to need some sort of distraction until she falls asleep otherwise all she has to focus on is the itching sensation and we can't read, play with her for hours at night! After the normal bedtime routine stories etc we have taken to putting animal documentaries on our phone on the dimmest setting and just enough volume so basically just enough stimulus to distract her but hopefully not keep her awake too long. It's not ideal but you do what you need to do to survive! The other night she woke up particularly bad, screaming, couldn't stand up so I decided to take her downstairs and put on a kids program i know she loves just to see as I suspected it would stop, it was like flicking a switch. Turned it off and it started again. Does this sound like something other people experience? It has confused us for a long time and sometimes made us wonder whether it WAS psychological but then you can see it waking her up in the night as she starts jerking about in her sleep so how can that be psychological?! Then I read something about RLS symptoms being related to dopamine levels and it made me wonder if a sudden rush of dopamine from doing something you love, together with the distraction of it could relieve the symptoms so quickly?? I've also read other people saying doing something that interests them can help distract them. Does this sound consistant with RLS? Sorry for the long msgs, we are just trying desperately to figure this thing out!
RLS can affect the whole body. Adults find it impossible to describe so no wonder it’s so hard for children.
Spiders under her skin is a perfect description!
Distraction does work- watching a tv programme or concentrating on something helps relieve the sensations.
Another possibility is muscle training- gentle squats and leg exercises will help. Yoga stretches as well.
You could make it a family ‘thing’ as part of bedtime routine. Yoga stretches and leg exercises, then a hot bath ( with Epsom salts to get magnesium into the skin), then a massage of the legs and arms , story time for distraction and hopefully some sleep.
If your daughter wakes with RLS, try more squats and stretches and leg massages and more distraction ( reading or watching a film downstairs).
I really think diet will help. Avoiding sugar and processed food. The food diary is a great idea and you could involve your daughter- it can be her distraction.
Definitely have a word with her school because she will be tired and irritable and there is a medical reason for it. Too many children who are suffering terribly with this disease are labelled as ‘fidgety’ or ‘naughty’ and teachers and doctors will try to blame ADHD.
Be proactive and say she’s being investigated for a neurological diseases which affects her sleep and concentration.
I will keep my fingers, legs and arms crossed that it starts to ease once off all anti histamines and food triggers.
Thanks Joolsg, these are all great ideas, she likes yoga so we will def make it a routine and have started a food diray now. She's home-educated, (not specifically because of this) but it def helps that she can catch up on sleep when she needs to. She was at school last year and was exhausted during times when it was really bad.
I have been diagnosed with restless legs for nine years and have been taking ropinerole I went to see my consultant that the ropinerole was not working anymore so was prescribed a transdermal patch Rotigotine and it worked
Children should not be considered for any dopamine agonist. The trauma of Augmentation and then withdrawal would be too awful. They are more suitable for adults at the lowest possible effective dose.
Hi just a quickie sorry .Maybe try a weighted blanket it didnt help me but does benefit some .They are expensive to buty but can easily be made by sewing pockets onto a duvet cover and filling with uncooked rice .Another tip some RLS sufferes love the heat - a hot water bottle helps me but would send other peoples legs crazy as their legs prefer to be cool so cool fans can be aimed at their legs .Its trial and error but worth a trial .Lastly make sure school are aware so she can get up and move around if necessary or allowances made if she is extra tired .Good luck let us know how you go on x
Thank you, do you know if that is in children in general or children with RLS? She had a blood test which at the last check after starting the iron 3 times a day was at 35. Would this be her ferritin level?
My own life seems to have been a history of super sensitivity to any " unnatural" food ingredients.
Raising agents-- biscuits, most sweets- crunchy bars, many chocolate bars, ice cream has something terrible in it and the list goes on.
I have become forensic in my eating now.
Did you know that organic Kallo stock actually has ' no added msg' That's good isn't it?😅 NO IT'S NOT! It just means Kallo haven't actually put msg into it, but some of the ingredients they use, will have.
I dread going out for meals, because the whole menu is a minefield.
I could go on for yonks on this tack. But will spare ye all.
Just to reiterate--- keep a food diary, be forensic in reading ingredient lists, and take nothing on face value. If she reacts to a meal, then analyse it utterly.
Its been an eye opener as to all the ingredients within everyday food and has really made me aware of all the stuff we're putting in our bodies. I always used to be of the mind that as long as we were eating fruits and veg and relatively healthy then it didn't matter too much about eating some 'junk' as well. It would never have occurred to me that stock cubes could be a problem! Now I'm starting to realise it's actually as much about what we don't eat as what we do!!
This just gives you an idea of possible "contaminants" around. The ' normal ' population would only be mildly affected by some of these, but others, such as myself and others, would be more severely affected.
😂😂😂 Thats a great idea!! I just dont get how they can turn around and say something like that when theres clearly something It could possibly be??! It feels like you have to basically diagnose yourself! We got referred to a peadiatrician but at the point we saw him the symptoms had eased off and i thought the iron in the muti vits she had started taking must be sorting it. He asked me if I thought she had a sleep disorder?? When I asked him to define what a sleep disorder was her symptoms didn't match his definition. Then he just asked what I wanted him to do??! I dont know!!! You're the doctor!!! 🙄😤😡 You get told not to diagnose yourself on Google, but honestly, I'm rapidly loosing faith in he NHS 😔
Also sorry to keep going on about iron but I'm a bit confused about iron/ferritin levels and whether they are the same thing? I've read ferritin levels refer to the amounts of stored iron so is this measured with a diff type of blood test to the iron levels in the bloodstream? She's had blood tests to check her iron which came back 18 on the first go and then 35 after taking iron supplements. Is this normal blood test the same thing as a ferritin test or is this something I should be asking them to check seperately? Hope this makes some sense!
Serum ferritin and serum iron are different. In adults serum ferritin needs to be above 100 and serum iron above 60. GPs will tell you anything above 15 is normal but for RLS it needs to be higher. I don’t know RLS levels for children but will do more research on this and get back to you.
If you were anaemic during pregnancy this could cause low ferritin and iron levels in your children and may be the cause of the RLS.
I’ve just looked up information on the US site and serum ferritin is the level to check. It needs to be between 50-75 so you should definitely ask your GP to help you safely raise levels to 75. Multi vitamins won’t contain the amount of iron needed.
Ask your GP for further prescription and also ask if ferrous bisglycinate is possible ( it doesn’t cause constipation and can be taken at night).
The US site also says clonidine or clonazepam are suitable meds for children suffering severe discomfort like your daughter.
It may be worth joining the US site ( it’s about £35 pa) because you get all the expert info which you can print out to show to your GP. I would hope he would accept he knows nothing and would read the expert views on the US site.
Not got any words of advice but following this thread with interest as I am wondering if my 2 year old has these symptoms. Again low iron found on test by GP. We are awaiting getting his bloods redone to check iron levels now. Hope you find some relief for your little girl, it sounds horrible for her.
Make sure its serum ferritin that is being tested for. There are other blood iron levels that are not strictly relevant to rls. And get the actual figure. For a child, I think it should be above 50 to 75. Need to check that figure. An adult should be over 100.
Hi, sorry it's taken a while for me to respond and sorry your little one is going through it too. It has got so much better since writing on here as we have cut out all the things people have suggested could be triggers from our everyday diet like caffine, not that she had a lot of that but she did like sneaking sips of my tea and as she has older brothers did have the occassional coke much earlier than they did. We def noticed the hols were worse so it would make sense that all the hol junk food could be playing a part. We've also cut out the biscuits, chocolate and sweet things as much as poss and its been really interesting as we are now seeing clear instances when she seems to be reacting to something. It seems like cleaning up her overall diet means we can really see when she is reacting to something. For instance two days recently she had a biscuit and eggs on the same morning, about 2-3 hours later she was itchy on both days. We now need to try them seperately to see if she reacts to one of them. Actually the thing which has made the quickest/biggest improvement so far has been hot baths. We've only ever had a shower so since she outgrew her lil tub she's mostly had showers. I discovered you can actually buy fold away tubs for adults so ordered one and bought a big bag of mag sulphate flakes from eBay (£20) for 25kg compared to the really expensive branded ones! She has been sleeping pretty much through the night for the last week! If she does wake she goes back to sleep easily! We have also realised that she needed something to distract her from the itching for her to be able to go to sleep so we've been using audio books as well so it's really bern a whole combination of things. I have also added mag oil to her body lotion and put a mesh bag of flakes under the cover by her feet to cover all bases 😅. We're basically trying anything we read! I'm going back to the doctor this week so I'll report back!
I'll bet the biscuits are a trigger. That was the first that I identified at 5 yrs of age!! It's the rising agent. Try her with a Crunchy bar and stand well back.🙉😝
Anything with rising agent ,for me, is deadly. Ice cream with crunchy bits, crumbed fish fingers and so on. All my favourites 🥵
You are on the right road.
And great ,too, that the mg soaks are helping.
Keep up with the sleuthing, you are on the right track.
Hi all, just wanted to add a little update as everyone was kind enough to reply to my original posts. I should start by saying, I don't really think it's RLS now as when her symptoms started improving and she stopped kicking and screaming in the night it became apparent that she feels the symptoms most in he toes, fingers and back. She also gets it in the daytime as well as the night. It still sounds like the sensation people with RLS get as it's like an itch under her skin that she has to rub and scratch and no skin irritation. After a year of trying all the things mentioned on here we noticed a big diff when we cut out milk, it got alot better but it was so hard to cut dairy completely (cheese mainly!!) that we only just took the leap along with eggs which we had suspected for a while. Her symptoms have pretty much disappeared, she mentions it only rarely now and it doesn't disturb her sleep at all! I'm really really hoping this is it! We have tested it a few times with eggs or dairy and the itching comes straight back. I just wanted to post on here incase it could help someone else. Even though its prob not RLS the symptoms are so similar that I'm guessing it's neurologically based. We finally have an appointment to see a neurologist next month too xx
A lot of people would consider RLS to actually be a neurological issue. Hence the prevalence of triggers as a source of botheration.
Thanks for keeping us up to date. And delighted that you've found a relief for her condition.
Apparently, latest research indicates that the autoimmune system is fighting against whatever was in the gut at a time of severe gastrointestinal upset in early childhood. And is triggered whenever exposed to that element at any future date. It is only in the specific part of the gut that was affected at the primary instance. Next step will be to target that area and deal with it. Science fiction!?
Have you tried lactose free milk? I have to use that all the time. Thankfully, it is now stocked in most supermarkets.
Hi Madlegs! That all sounds really interesting!! Will look into that! Yeah hopefully at some point someone will figure it all out... We have tried lactose free but that doesn't work for her unfortunately. It would have been so much easier! Hope you keep finding things that work for you!
Hi, I’ve had RLS my entire life, since before I could even walk. It was never diagnosed, and I was punished by my parents for doing the only thing that brought me temporary relief, which I’d been doing since I was a baby, and stopping me from doing that became the focus of their attention rather than what was the cause.
I suffered pretty much every day as a child, often during the day when at school as well as the usual times. My RLS actually improved as I got older, to the point I only suffered for a few days a month for many years. That is until I was prescribed Tramadol for sciatica. I was taking it for a few years before forcing myself to wean off it but it seems to have changed my brain somehow, and now I get it in my left arm, neck, base of my spine and it seems to be spreading to the top of my head! The reason I’m saying all this is that it isn’t true that it necessarily gets worse with age, and not everyone fits into the stereotypical doctor’s version of what symptoms/severity RLS sufferers should be exhibiting. I’m so atypical it can be frustrating as people contradict you all the time.
I’m so glad your daughter has parents like you who will fight to get her the help she needs. You’ve found a great source of help and information here.
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