I'm an RLS sufferer, as are my parents and sister. Now it appears my 9 year old daughter has it. The problem is in trying to get a diagnosis. So far we have had 2 blood tests and have now been told to "wait 6 months to see if it goes away". Think the GP is hoping that we'll go away!
Is there anything we can do for our daughter while we're waiting for the 6 months to elapse?
Any suggestions welcome.
I am sorry to hear about your daughter. I expect you have seen this link from the RLS-UK website rls-uk.org/rls-in-children
If your daughter is taking antihistamines this may well worsen symptoms.
Taking videos of your daughter when suffering with RL symptoms may be a good idea, to show your doctor or a neurologist?
Diet can be a real trigger for most and sugar and food colouring are often culprits. Perhaps keeping a food diary would be a positive thing to do.
Have you a copy of the blood test results your daughter had? Her ferritin level could possibly be low.
Dr Guy Leschziner at Guy’s in London may well be worth seeing, if not too far from where you live.. He does private as well as NHS referrals.
There have been posters before with similar concerns.
I couldn't put any advice better than Kaarina has. Highly endorse the food diary.
The culprit is/are often the stuff the child likes most!🤪 The human body seems to have a real delight in self torture!
I love potato crisps- the high salt gives me fizzy legs. Same with ice cream, and anything with msg. And that is a whole minefield.
If you search on this site for child rls, I'm sure you'll come across some interesting conversations.
You are certainly not alone.
Good luck.
Wait to see if it goes away.!! Do they not know as you and parents and sister have it then this is what your daughter also has, and its not going to go away. if only.! Kaarina has posted some good advice and a link for you. As has Madlegs.
Just want to say you've got some good advice there.
Watch food - it is a bugger. Low Oxalate, Gluten Free, Dairy Free avoiding caffeine, Veganism and reduced calorie intake have all been found to help people. Also avoiding alcohol - tell her she's to stop going to the pub 
!!
There are a number of non-medical options. I have found hot baths and showers as vital over the years. When I had a period of bad RLS and was kindly left drug free by a Dr with personal issues they couldn't help but project onto patients they seen I was saved by the hot water. It works temporarily but it gives relief and that is something.
Yoga stretches can be helpful. Youtube has lots of videos that can be used, I am sure there will be one that suits.
youtube.com/watch?v=wK99lII...
That is one example of what may help - I don't do Yoga myself (other than the stretches online) but have found some great benefit, not just for RLS, from Yoga. I am sure the adult ones would work equally as well but your daughter may appreciate another kid doing it.
Has she had her Iron levels checked? That can be a huge issue and if iron is low then that will need addressed. A simple IRON PROFILE blood test can show that.
Distraction is great and under appreciated/ignored often. If you can keep her busy and distracted in the evening you give some relief from the symptoms - assuming the symptoms occur earlier in the evening and not at bedtime.
Keep the food diary, keep a record of the suffering, read up on NICE guidelines and RLS treatment for kids. Arming yourself with knowledge is probably your best weapon, Drs, as you are probably well aware, are not experts in RLS - we must become those experts if we are to get the help we need.
I am sorry you have to watch your daughter go through this. One of my kids looks like they may have some issues but I am not completely convinced its RLS. Thankfully like myself as a kid its not too bad and not too disruptive. If its any consolation kids are hardy little creatures and this stuff fades into the mists of time.
As suggested - get the actual iron test results - the number for Ferritin is very telling as causative for RLS. The growth demands for children deplete iron stores. A simple supplement could alleviate the RLS.
I'll see if I can get the ferritin levels off the GP. He did mention that her vitamin D was low, which struck us as odd, given the great summer we've had and how much time we've spent outside during lockdown.
We've had her on multivitamin and iron supplements for a month or so but it doesn't seem to have made much difference.
We'll go down the food diary route to see how it goes.
You are entitled to have a copy of the report of your daughters blood tests. It is your right! 
If your daughter has been covered in sun cream when outside, maybe this is one reason why her vitamin D level was low.
You poor daughter and you and your family . My mum , sister and grandad and my daughter who is now 34 have all got it . I think I’ve posted on here before that mine started as a child . In those days you were just told to stop fidgeting. Diets were standard those days and we ate healthy as my dad was a butcher and we were only allowed half a packet of fruit pastilles on a Saturday and the other half on a Sunday. Our Easter eggs lasted months ! Foods and how they affect our bodies is much more understood now . Looking back I used to get it bad if I had a late night - watching Dallas ! On a Saturday night I would be lying across the floor ‘fidgeting’ I am showing my age now !
Hopefully there will be a professional who can help ease your daughter’s symptoms or at least manage them .
I really wish that we all didn’t have to go through this . Please oh please let there be a cure one day . I wish you and your family some relief. This site is wonderful as you don’t feel that you are the only person in the world going through this . ❤️
Yes it ran in the female line of my family and there is now evidence to show it has a genetic basis. But it wasn't recognised back in the 50's in fact, not until the 90's really. Why doctors imagine a genetic problem can just go away I don't know!! Your daughter's lucky to have a Mum who understands this.
I have a copy of a recent book Restless Leg Syndrome published by the American Academy of Neurology. It devotes a whole chapter to RLS in children. I wish I could photocopy it for you!! The American website rls.org which the UK site refers to (as does Kaarina) has some REALLY excellent stuff for kids and teenagers ... excellent downloadable booklets with things to help and interactive stuff to do but you have to be a member (costs £37 or $) but there's so much more besides that there making the membership seem very worthwhile. ... The UK site and the American site have really got this sussed ..we just need GP's and Neuro-Consultants to see it all.
rls.org/file/healthcare-and...
rls.org/understanding-rls/r...
Hope you are able to get the help you need
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