I’m looking for advice regarding my 7 year old daughter. She is showing all the signs of having RLS (I’m a sufferer for many years, so I know the signs and symptoms well).
My husband and I keep telling her it’s ‘growing pains’, as we don’t want her to know the truth (she has seen first hand how I struggle with it and how badly it effects my moods….so I don’t want her to know that she has it too)! Ever since she started showing symptoms (around a year ago), I’ve tried hard to hide my mystery from her, but that’s a difficult act to maintain.
Anyway, my question is: What should I do about it? Should I bring her to a neurologist?
I’ve spoken to my GP over the phone (due to Covid) and he’s adamant it’s just growing pains….but I Know it’s not, unfortunately. It breaks my heart to watch her struggle, especially at such a young age. And I know it’s not my fault, but I can’t help feeling guilty for passing it onto her.
Any and all advise would be hugely appreciated.
Katie xx
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I am so sorry to read your posting about your 7 year old. It must be heartbreaking for you to see your child suffering in this way. Here is an old thread that you may find of some help:
There was a lady with similar situation a while back.After keeping a food diary she discovered the rls was worse at weekends and holidays, which led to ice-cream, fizzy drinks and sweets ( higher sugar intake) for the child.
She made it ( the diary) into a detective game for the child.
Such a shame that she has started suffering at such a young age.
I'm certainly no expert on RLS in childhood. There are a few things I can tentitively suggest.
Iron deficiency is my first thought. This may not necessarily be anaemia or general deficiency but rather the brain iron deficiency that causes RLS.
Second is diet. In the short term there are probably lot's of things she likes which are major triggers. The main trigger is sugar.
In the longer term, it's possible she has some food sensitivity. This is not the same as an allergy, but can cause chronic inflammation and inflammation is a mediating factor in RLS.
The most common sensitivities are gluten or lactose. It's possible she can get sensitivity tested perhaps.
It's mainly a personal opinion but I don't think you should withhold the truth from her. This was a tradition in child care really until round about the 1960s. It was generally thought you protected children by not telling them things. Certainly I was brought up that way.
There was, I vaguely recall, research that suggested otherwise. Certainly some practices are based on the idea that children are better able to deal with things if they are more informed. Some hospitals have "saturday clubs" where chidren about to undergo surgery visit the hospital before they're admitted.
I recall also, when I was four my parents taking me to a dentist. They told me a load of rubbish! Hence I had an horrendous experience and never really trusted my parents again.
Obviously your GP is going to be of little help. Not only ignorant, but also unwilling to even consider the idea and find out more.
I wouldn't suggest a neurologist mainly because they too can be quite ignorant about RLS. In adults, never mind children. In addition their approach will be mainly the same as theur zpproach to adults.
I suggest therefore you get a referral to a paediatric specialist
Perhaps getting in touch with Great Ormond Street hospital for Children in London may be a good start, should you wish someone to see your child. That is is if it is not too far for you to travel. There are quite a few neurologists in London too with an interest in RLS, who may be able to help your child.
Katie, Here is another thread from 2 years ago. You may find something in this thread to help you and your daughter. As Joolsg says, 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.
Do the symptoms COME AND GO? Well, it means that there is a TRIGGER!
Please keep a diary of what she is eating and her symptoms! It is most likely connected to a reaction to food/drink especially if the symptoms come and go. It could be food, additives, sugar, histamine.. My son had red swollen toes and many symptoms until he was diagnosed with Crohn's disease and later MCAS (inflammatory condition with many triggers).
CAREFUL AND CLEAN diet is the MOST important thing!
My son is on Cromoglicate (a medication that prevents a reaction to food in the digestive tract) and doesn't need ANY immunosuppressive treatment the idiot doctors wanted to keep him FOREVER on! All the tests are NORMAL and not thanks to doctors, but despite the many misdiagnoses.
And he hasn't had the problems with his toes in years!
Watch the cause of your child's symptoms! No doctor during the 20 min appointment will be able to find the trigger. You will be going to appointments for years likely with no result. However, it is important to have a doctor who will support you in identifying these triggers and might offer tests if needed. Usually such a doctor will be a GP
Having read other replies I notice an interesting mention of low iron.
We all had low iron. In our case it was a result of malabsorption and triggered by digestive tract inflammation.
It is IMPORTANT to get the hold if test results yourself! The Ferritin (the measure of iron levels ) has a HUGE range. My teenage son's test sheet shows the norm as 24-336! Prior to diagnosis his result was '1' above the bottom number and nobody said anything as the computer considered it normal! It was not! It was WAY TOO LOW! It also caused the symptoms of constant fatigue.
If you test your daughter's ferritin, make sure you check the results yourself!
Don't trust your child's health to anybody blindly. They will make many mistakes and incompetent calls and won't even say sorry for the suffering caused! The system is there to protect the system as their main priority. We learned it the hard way.
Please read The 4 Pillar Plan by Dr Rangan Chaterjee. It tackles all aspects of lifestyle to avoid long term chronic disease. I'm reading it now and find it fascinating and easy to implement. Good luck with whatever direction you go in.
I am so sorry. I read all the replies and would suggest diet and exercise. I am medicated now, when I wasnt my plan was Get to bed before being tired. Peppermint oil and lavender oil on my feet and calves at bed. Magnesium spray I have heard helps too.
I can not have food dyes- mostly red and blue. Not even an Advil. Not any dye in medicine. White pills only. My daily vitamins had dye also. Good luck.
You're right, your GP is wrong. It does make me angry that GPs know so little.Firstly ask for blood tests as low serum ferritin is the usual cause in children.
Also consider joining the US foundation for $35 a year. Karla, the head of the organisation has a daughter with RLS and they have a print out on childhood RLS to show to doctors and schools. It's commonly misdiagnosed as 'growing pains' or ADHD.
rls.org
As others suggest, a food and drink diary is essential as common triggers can then be eliminated from the diet.
Thank you all so very much for your messages and all the information included. It's all very much appreciated and I will take every suggestion into account.
I've looked at the all links provided, as well as the old threads (which were hugely informative). There's so much information there, it's very encouraging. I've not had the chance to read it all properly yet, but I've printed it all up and will study it carefully, as soon as I get the chance.
I'm particularly encouraged by the diet stuff....although I've had RLS myself all my life (and very severely since having my first daughter 10 years ago), I've never really tackled my diet (other than the obvious caffeine, alcohol and sweeteners). My daughter has a typical children's diet...generally fairly healthy but with more processed foods and sugar that I would ideally like. I will start a food diary, as you suggested Madlegs & Wamsy, and will arrange to have her blood tested. I will also email Dr Buchfuhrer as you suggested Kaarina.
Elffindoe, I understand your view regarding not telling her the truth about her leg pains. Myself and my husband have discussed this time and time again, and both feel that she would be fearful of an RLS diagnosis, given that she has seen me struggle so very badly over the years. I've been visibly angry, upset and desperate. She has regularly seen me crying, while violently banging my legs etc. (obviously, since she started showing symptoms, I now try hard to hide my emotions from her). For this reason, I don't want her to know just yet....not until we have some sort of solution in place. Having said that, I do agree with your sentiment and will tell her as soon as I feel we have a positive outlook.
Thanks again for all your support. I seriously don't know how I would cope without this group.
You need to get your own RLS under control so she isn't seeing you suffer and so she can see there is hope. Then definitely tell her. As mentioned above, not telling her will cause her to lose trust in you once she finds out which of course eventually she will have to. Plus kids are smarter than we give them credit for and she will soon figure it out on her own and wonder why you are hiding it from her, with again losing trust in you, plus thinking you think she is stupid or don't trust her with the knowledge.
I have been trying to control my RLS for 10 years now (I’ve had it since I was a child but it only became an issue when I was pregnant with my first child…and it has got progressively worse since then). There are times when I think I have it under control, for a few months or so, but then the meds stop working and I’m back to square one!
I totally agree with you that I need to get it under control, for both my own sake and my daughters….and I am trying.
Since noticing my daughters symptoms a year ago, I have made every effort not to complain about it.
I agree with you that she’ll figure it out sooner or later….so I will tell her, but not until I have some sort of plan in order. Thanks for you advice….I appreciate it. K xx
Hi, Katie_ so sorry; that is the age mine started up (now, I am 69). One of my daughter, 42, also suffers RLS, however, fortunately, not something that prevented her for rather good night sleep (her problem always was falling sleep; OCD and Tourette, beyond RLS); never was necessary treatmente for RLS, therefore;
_ quick questions: RLS only during the day, or jeopardizing sleep? any sign of ENT problems? already consult ENT professional? that because, RLS, when jeopardizing sleep could be eventually associated with ENT problems. I have both, RLS, and UARS (upper airways resistance syndrome), then I know very well this situation: agravating night with UARS (even very minor flow restrictions, say, 10 to 20%) lead to more severe RLS and awakenings, interrupting sleep.
Thank you for your message. To answer your questions…my daughters RLS tends to only occur in the evening and night. It doesn’t disrupt her sleep (she’s a great little sleeper and thankfully she sleeps all night without waking), but it does upset her when she’s trying to watch tv in the evening or trying to fall asleep at night.
That's great! In my modest opinion, then, there would be no need for treatment. Maybe, Rigorous sleep hygiene, food controls , etc , should do what is needed.
For me, no caffeine, no alchool, sleep hygiene, some EFT (you can surrogate for her, eventually) before bed (sometimes) are enough to allow me falling sleep maximum 15 minutes. Later on, by 4:00 am, between my two sleep phases, more EFT quite often is needed, though.
My earliest memory of RLS was at about age 6. I had no idea what it was and never told my mother about the episodes. By the time morning would come around, I would have forgotten about it. At that age and throughout my young years, it was very intermittent and not nearly as severe as it is now that I'm older. I would have loved some relief when I was a kid so if it were my child, I would fight to get her some help. IMO
Hi Katie some good advice has been posted here already.I do feel for you. My son was diagnosed with periodic limb movement disorder at 13 months of age (he's now six). I also have that condition so it was devastating to find out that he had it also. We tried oral iron therapy for 6 months but that didn't improve matters. He sees a paediatric sleep specialist and a paediatric neurologist. I have chosen not to tell him about the condition because I dont want him to identify with having it, or to become too fixated on being able to sleep. I will tell him in due course but don't see any pressing need to at this point.
Hi Katie. As others have mentioned please look at diet first. I have now controlled mine by taking no salt ( it’s in everything so look out for it) reducing chocolate to mornings only. If I have had salt etc then a hot bean bag from the microwave placed on my legs gives me great relief.
Hi Katie…it must be so hard to see your daughter suffering, sorry to hear this.
All good suggestion re iron checks and food diary. Just wanted to add there might be some relief in weighted blankets? They are expensive but I have heard they have worked for some children with rls. They are expensive so do your research of course.
I am hoping for some relief from here too.
My own RLS is connected to naps (!) and sciatica. So if I dare fall asleep during the day I’ve had it and if my sciatica plays up it will most likely set it off…I have found a tens machine over my lower back and back of thighs to be a god send. Just sharing incase it help.
Supplementing with magnesium and potassium resolved mine for a period of time. Later, when I began to have RLS issues again, my doctor had me add sea salt (1/4tsp) to each glass of water. Problem solved!
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