Forgive my ignorance and all my recent questions!! Trying to figure out our next step as our Drs have been utterly useless in suggesting anything. Our 5 year old daughter has had rls syptoms for 2 years now and we are only just being referred to a neurologist on our own request as we'd been told at the previous appoint there was nothing more they could do 😡. I have no idea how long that will take and aside from the fact we can't afford to go private I'm wondering if it would be worth doing it anyway. My question is do neurologists do investigations and treatment that don't involve meds? We want to avoid that if at all poss so if the purpose of seeing a neurologist is really to be prescribed meds then it may not be worth our while at this poin. I'd obv find any amount of money to relieve her symptoms so if they would also test her for other nutrient deficiencies (she is already taking iron) or suggest other options... I don't know what's available... and have pretty much lost faith in the NHS with regards to this. It feels like some weird game where you have to guess what's wrong with you and what you need them to do about it or forget it, I just can't get my head around it, arghhhh!! Sorry for the rant, its just sending me a bit crazy not knowing what to do next... I'm sure the experts are great WHEN you get to see them.
Do you just see a neurologist for meds? - Restless Legs Syn...
Do you just see a neurologist for meds?
My experience, based on information from users on this site, is that the vast majority of neurologists are fairly ignorant concerning rls.
I understood that you had made progress with the rls?? Re dietary control?
If I was the Neurologist, I would be inclined to tell you to continue the diet programme, eliminating foods and adding and keeping a diary.
I would be avoiding putting the child through batteries of tests, at that age.
I would make it a fun game of " hunting the pirate foods" that give the jitters.
I appreciate that parents want their childer to be "well" at all times, but we have to work with what's in front of us with minimum stress.
I hope you are able to work this through ok.
All the best.
Thanks madlegs, it was going well but the last two nights were bad again. We are doing all the dietary things(nice idea re the game!) but just don't want to miss anything that could really help just because we didn't know about it.
There are no specific tests for RLS. Diagnosis is by taking a case history. The only tests that would help are blood tests. Most neurologists in the UK are hopeless when it comes to RLS- I have MS and my old neurologist put me on Amitryptiline for nerve pain and it made the RLS 1000% worse. He knew I had severe RLS but didn't have any idea that Amitryptiline is poison for RLS. My new neurologist at least has the honesty to admit she knows nothing about RLS.
So, as you can see, even top neurologists will know very little about RLS and even less about paediatric RLS so you would be better saving your time and money and doing as much online research as you can. Medical schools in the UK mention RLS in passing- it is not taught in any depth. Even neurologists will not learn anything about it unless they happen to be working with one of the few UK specialists. There is no drug or medical research underway in the UK and no funding for research so trainee neurologists will have no interest in studying it.
(There are a few US studies on the link between ADHD and RLS in children ( but is it a chicken and egg situation? Does lack of sleep cause ADHD??). Anything that increases dopamine will help so anything your daughter enjoys will release dopamine.)
It is infuriating as it is the most common neurological disease and has the greatest economic impact. King's College doctors have admitted the reason they can't/won't prescribe methadone to adult sufferers is because there have been no UK studies on its use and there is no funding for research.( It's the cheapest opioid and so drug companies won't fund studies because they won't make any profit). If I win the lottery the first thing I'll do is fund research.
Most RLS experts in the USA would be reluctant to prescribe meds for children and would recommend keeping a food and drink diary and ensuring serum ferritin is above 75. The only med that seems to be acceptable for children is clonazepam, a benzodiazepene but that causes tolerance and therefore, regular drug holidays would be recommended.
So, in conclusion, I don't think there is any point seeing a normal neurologist in the UK but perhaps ask for a referral to Prof Chaudhuri's RLS clinic at King's College Hospital in London. Normal NHS appointments take 8-9 months but if your GP stresses that it's urgent and for a child, you may get seen sooner. In the meantime, you should keep watching for food and drink triggers and raise serum ferritin levels.
Whatever happens, don't let any doctor prescribe Dopamine agonists- Latest theory is that they permanently damage the brain's dopamine receptors.
I wish I could answer with such clarity!😩😍
Oh-- while I think of it-- Cheesecakes are dynamite, because the base is all shop biscuits- full of rising agent.🙄
I thought I was going on a bit there madlegs. Got carried away with a bit of the old rage at the uselessness of the auld neurologists and the thought of a wee girlie having this dreadful disease and knowing the feckless GPs won't bother to research any further.
I know if I were a GP with a poorly child patient, I'd spend an hour googling paediatric RLS. It takes about 5/10 mins and doesn't take long to quickly digest the key points. If we , as lay people, can do it then why can't they? I know they work long hours but....
Anyway, catching up on Corrie on TV as the legs were doing a Michael Flatley and I need the distraction.
Night all.
Not at all! Everything you said was super helpful, The Dr you mentioned is the one I have asked to be referred to but they didn't mark it down as urgent and when I gave the form to recept they said triage would allocate us a neurologist anyway so I now feel like we could wait months to be seen by someone who knows nothing about it. The iron levels were something I wanted to get help with as like you said they should be higher but unless you are diagnosed with something they dont want to treat for it. He just said we could keep going with the iron if we wanted to... I have heard there might be better iron supplements to take so wanted to talk to him about that (the one she is taking is sodium feredetate trihydrate if that means anything to anyone!) but he just said we could switch if we wanted to, no actual advice!! Are they so worried about being sued or something that they don't want to actually suggest anything?? My mum went to hospital with heart flutters last week and they asked HER if she wanted them to increase her medication?!! I was thinking of changing GP but there are 4 in our practice so if we have the same response from all of them then it feels a bit pointless moving. Maybe better to try and educate them although at the mo it just feels like they think I'm making it up grrrr!!! Hope you managed to get some sleep last night, we had a better night xx
If I were you I would start printing out all the articles you can find on Google about paediatric RLS, put them in a large file and then drop them at the surgery and ask one of the GPs to have a look "when they can find the time". You never know, one of the GPs may decide to read it.
Iron supplements are all different but the ones I used were called gentle iron - Ferrous Bisglycinate from Holland and Barrett.
Research shows that taking every other night leads to better and faster iron absorption because the brain tries to stop absorption by producing Hepcedin. You can fool the hepcedin by taking every other night.
Gentle iron doesn't cause constipation and doesn't need to be taken with orange juice ( vit C). You can also buy it in skin patch form from PatchMD in the USA, It's quite cheap and post is very fast and not expensive. However, your GP should monitor levels with blood tests but I think a 3 month trial period will not cause any problems because your daughter's serum ferritin was 38 and needs to be above 75.
The patches you should get are the iron patches- put on the arm or thigh every other night and then remove. Easier than swallowing pills.
Glad to hear your little one had good nights- let's hope it continues.
Sending positive thoughts your way.
Thank you for all your advice, it really means a lot. It's a good idea re giving the info in to the doctors. The glycinate was actually the one I had mentioned to the Dr so very interested in trying it, I checked out the patches and noticed that they contain 45mg of iron, the iron syrup she has from the Dr is 27.5mg per 5ml spoon and she takes it 3 times a day. That made me wonder which she is better off taking as the syrup is all in all a higher dosage but maybe the better absorption of the patch actually works out better? Maybe it would work out the same?? She has no prob taking the syrup and hasn't had any side effects from it but we haven't been taking it with orange juice, there is vit c in her multi vits which she takes in the morning but should she have some juice or an orange with the other 2 doses? I guess this is why the glycinate could be better. Also do you think then it would be better if we were taking the syrup every other day? Sorry for all the questions!! Wishing you a restful night.
I would use the patch AND the syrup but only on alternate days. Check the ingredients in the syrup as there may be sugar which would aggravate the RLS. If the iron in the syrup is anything other than ferrous bisglycinate, ideally vit c should be taken to help absorption. Maybe vit C is added to the syrup as ascorbic acid?
I’ve had 2 decent nights and that makes everything look rosy! Even if tonight is bad I know there’ll be better nights to come.
Sadly a child can’t think like that so I really hope the food diary and the iron supplements help.
Glad to hear it, yes everything is so much better with sleep!!! Thanks for the lead 
I never thought about the ingredients...
6.1 List of excipients
Methyl hydroxybenzoate (E218)
Propyl hydroxybenzoate (E216)
Citric acid monohydrate
Saccharin sodium
Glycerol
Sorbitol solution
Ethanol 96%
Black cherry flavour
Ponceau 4R (E124)
Potable water
Saccharin isn't good is it?? I don't know much about the others but maybe the citric acid is there for absorption?
We replied at the same time. The saccharine, sorbitol, cherry flavouring and E numbers are all potential triggers. The citric acid is for absorption.
I suspect you can ask for liquid iron without the sweeteners and colours because many children react badly to them.
Just looked up the ingredients in sodium feredetate and sorbitol and E124 & E218 could be problematic. Sorbitol is an artificial sweetener and the E numbers are artificial colourings which can cause allergies. I remember my son reacted really badly to the yellow colouring in liquid antibiotics- he couldn’t sleep and became very hyperactive. It’s possible that the additives in the oral iron may be adding to the problem so the patch may be a better option.
Lawd it’s difficult!
Isn't it 🤪 Thank you 🙏 lots of food for thought
Thanks Madlegs! Every time I read 'rising agents' on ingredients I think of you, hehe! We discovered them in crumpets and hot cross buns the other day... nooooo!
Brilliant!
I have just seen an advertisement for a aid that states it can elevate our rls Release 417, it’s being advertised on fb site, looks like a tourniquet to me have a look.
I second madleg’s comments about this reply - clear and comprehensive - though his response was also excellent.
It is worth bearing in mind that a two-pronged approach is always indicated ie ensuring that exacerbants are avoided and finding non-invasive treatment options to help avoid/deal with symptom onset (stretch exercises, hot/cold water etc - all tricky with a 5 year old, I appreciate). Would it be worth trying a tens or other vibrating type machine?
Thanks involuntarydancer! Thankfully she's actually embracing the yoga and seems to enjoy bath temp at a heat I couldn't withstand so that part has been plain sailing so far! Is there something which vibrates which isn't quite as intense as a tens machine? I remember hating it when I was in labour!!
Sorry about delay in replying. There is a device called a relaxis pad which is specifically designed to treat RLS. It uses vibrations. It is extremely expensive - nearly $1,000 and its effectiveness is by no means assured. However, I have seen it reviewed positively by someone who got one for their child. They operate a return policy in the event of the device being ineffective so I suppose you could try it on that basis. If you put the name in the research bar you will find a number of threads about it.
Some people also find the vibration plates used in the fitness injury are helpful for their rls and these can be picked up relatively cheaply second hand on gumtree/adverts websites. It might be worth trying these.
Finally you could look at regular electronic massage implements/cushions for vibration - again often available cheaply second hand.
Gosh your last sentence is worrying as I have been on them since 2006
Yep I know. I was on Ropinirole for 15 years , suffered augmentation and the horrendous withdrawal.
Now on opioids and pregabalin BUT I have only had a handful of nights without RLS in the 3 years since I came off Ropinirole. Dr B believes that dopamine agonists cause permanent damage to the dopamine receptors in the brain and it would certainly explain why I still get RLS. Nowhere near as intense or as frequently than when I was on Ropinirole though.
It doesn’t happen to everyone- there are many people who get off the dopamine agonists and start other meds like pregabalin or opioids and they never have any RLS episodes.
So don’t worry too much- many people have great success after getting off DAs like Ropinirole and pramipexole.
I nearly committed suicide coming off Mirapexin and in my ignorance at that time I accepted the Neupro patch. My neurologist wants to up my dosage every-time I see him. I have tried to explain that this is dangerous for me as I have already experienced augmentation but I’m just brushed off. I am on 2mg and have refused to up it to three despite being prescribed. My pharmacist is brilliant and gives me my prescription in 1mg patches so I use two. I thank God for all of you on this site who have given me the courage to challenge the so called experts. Thank you
You are not alone- many of us went to a very dark place during withdrawal from DAs.
I was lucky that I found this site and learned that augmentation would happen pretty quickly on another DA. Like you, Professor Choudhuri’s team at King’s College London tried to put me on the Neupro patch after Ropinirole. I knew from the knowledgeable people on here that this was bad advice and I refused. As the NHS appointment had taken so long (9 months), I had already found a combination of OxyContin and pregabalin that was helping.
I will never touch another DA because I don’t think I would make it through another withdrawal.
The UK neurologists seem to be about 10 years behind the top US experts.
So many of us have been so badly let down by GPs and neurologists.
No wonder we have to become experts- reading every research paper we can find .
Trust your instincts- you’re right not to increase the dose.
I'm so sorry. Its infuriating, and deeply depressing that this seems to be such a common theme. Sometimes we just need someone to listen, I'm glad your pharmacist at least is. Well done for sticking to your guns.
In my limited experience, my neurologist, who is sympathetic, and has prescribed me ropinerole, which has worked, plus something extra for a long plane flight, hasn't heard of any of the little fixes I've figured out myself, or the tricks people suggest here on HealthUnlocked. I find stretching my calves to be helpful, and I stretch before bed, plus anytime during the day when I feel symptoms coming on. The experts do recommend stretching the calves. I take ropinerole 2 to 3 hours before bed. If I have trouble with my legs in the night, I get up and stretch my calves for 2 or 2-1/2 minutes, and apply Topricin, an herbal topical cream. I have no idea whether it's better than any other topical cream, I use it because a friend recommended it for pain, and it helps me for RLS. Probably a 5-year-old could learn to sit up in bed and stretch her calves if she has trouble in the night, and apply a cream, though she might want you to help. I'm sure you need more sleep, too. I'm a mother, I remember those nights. Also, if I lie awake for any other reason, my RLS will start up after 45 minutes or an hour, so any other trick to help your daughter get to sleep would be good. I've tried to find sleep positions in which my feet aren't pointed and my legs aren't bent, so my legs aren't getting cramped as I sleep. A bed with a footboard that extends above the mattress would help, because she could sleep on her back with her legs straight and feet propped up vertically against the footboard. Or she could sleep on her stomach with her feet hanging off the end of the mattress. I usually sleep half the night on my side, bent at the hip but with my legs straight. I put a long (king-sized pillow) between my legs and feet, which sort of helps keep them in place. I don't know what else to suggest, but probably others on this site have tricks.
We've just realised that keeping her as active as poss before time to sleep really helps! Stories downstairs so shes not still for too long in bed... Maybe we can try something to elevate her legs. Thank you
They can test her ferritin levels, and correct that if necessary.
It is a blood test! So may not be appropriate for a 5 yr old?
Sounds entirely appropriate to me, if ferritin is low appropriate supplements can be discussed.
I would not ask my 5 year old child to undergo a blood test, particularly,if like me ,they have needlphobia. Inless it was life necessary.😎
ncbi.nlm.nih.gov/pmc/articl...
Madlegs, the consequences of RLS can be devastating. A lifetime of disturbed sleep can ravage the cardiovascular system as well as the mind.
I think an iron test would be the very first thing one does.
If the mother is iron-deficient in pregnancy, the child may be extremely iron-deficient. (It is possible to induce RLS in animal models by putting them on an iron-deficient diet.).
The alternative is drugs, which I would hope could be put aside for as long as possible.
The suffering of a child, not able to understand or properly communicate, must be appalling.
Hi
My 10 year old grandson has just been tested for Narcolepsy as my daughter has Type 1. The point, though, is that the process was fairly quick for London NHS, in my opinion, within a few months altogether. The 24hr sleep study was done at St. Thomas's hospital in Westminster 2 weeks ago, he has also been wearing a sleep watch for 4 weeks (finished today). They are fantastic with the children my daughter said. She even received a call a couple of days after the sleep study and his follow-up has been booked in for February 4th. Once they have the children, they appear to be working very fast .
I Hope your daughter gets the help that she needs. Keep strong.
Thank you that gives me hope to hang on a bit longer for the NHS. I'm glad its going well for your grandson. I think your right that once your in then the NHS can shine, in my experience its getting past the GP that's the major hurdle!!!
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