I’m Nicole and I have a 3 nearly 4 year old daughter who I think has restless leg. I have had it since been a child as have both of my parents.
She was an awful sleeper since birth but we sorted this by hiring a sleep consultant when she was 8 months.
I then started to study baby and child sleep and for just over 2 years I have been changing the lives of families who have baby’s and children that don’t sleep well, so I do genuinely know what I’m doing with sleep.
This is why I’m concerned.
My child is still a terrible sleeper. Since she was 2 years and 4 months she has woken in the night complaining of her ‘knees’ and crying. At this age I had her at a&e because I couldn’t work out why she was so upset. We ended up going back 3 times and they did an x-day and told me all was fine. She doesn’t wake up often in the night with her legs, but she does do it.
Where it seems to be a major problem is early rising. She is awake around 5am most mornings. If this was her natural wake time and she could cope with the day, I would accept this, but she can’t cope with the day and she is exhausted. My husband seems to think I’m crazy and that 10 hours must be all she needs, however, I know her and her sleep and if she is regularly getting 11 hours she is a well behaved little girl. On much less she is a nightmare, which is understandable in my book.
This morning it was 5:10am and I tried to get her to sleep in bed with me, but her legs won’t stay still. She kept kicking and it felt very involuntary. She did not go back to sleep, despite been exhausted, rubbing her face and yawning excessively.
I have seen the doctors many times about her sleep and I think they think I am crazy. I have an appointment booked for Friday to speak to them about this and don’t want to be fobbed off again.
Does what I have described sound like restless leg and something that should be treated? If so, how can I get the doctor to take me seriously and where should I asked to be referred to? I am due another baby in March and can’t continue like this. I’m at the end of my tether.
Any advice or experiences similar would be gratefully appreciated.
Thanks
Nicole x
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Elocing
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Hi Nicole, I was diagnosed with RLS in 2016 along with period limb movement of sleep (soiund like what you daughter is suffering from), I'm 48 and have had it since I was in my teens, so its taken a very long time to get an official diagnosis. I eventually saw a neurologist who did the diagnosis with a sleep test. His name is Professor Matthew Walker, he works out of Quenns Square London. You really need to take your daughter to somebody like Professor Walker as GP's simply do not understand the condition and aren't in a position to diagnose or treat it. I would do everything you can to get a confirmed diagnosis either way as if it is RLS/PLMS and it doesn't get diagnosed then it makes life very hard.
I am so glad you finally got a diagnosis. I was thinking it would be a neurologist as I saw one many years ago and was put on ropinerol for my RLS (lack of dopamine) and that helped massively. I haven’t been on it for 5 years now due to pregnancy and breastfeeding etc as it’s toxic to babies.
I do think I need to push this though. It can’t be normal that I have got hundreds of children sleeping well but can’t get my own to sleep well with the knowledge I have.
It is so stressful because if this is medical i can possibly deal with it better.
Fingers crossed the gp takes me seriously this week. We are in Manchester so don’t fancy trekking her to London, but if I have to I will.
Hi Nicole, have you checked the rls-uk.org website for info in rls in children? That may be a good starting point. If not there, you may find relevant info on the US site rls.org. And at peast have her iron values checked, especially ferritin. Don't accept 'normal' as a result, it needs to be high in the normal range for people with rls - assuming that is what she has. Mot unlikely given your family history. Good luck, this must be extremely exhausting for you too.
Thank you. I am wondering how best to go about getting her iron checked. She had to have bloods done about 5 months ago and she had the biggest freak out ever. Resulted in 4 minutes people holding her for a finger prick and they didn’t even get enough blood. I have no idea how we would get them going forward. I feel a little lost with it all. It is exhausting and not just for me. We’ve just had the biggest meltdown ever about washing her hair. Very unusual reason for her but it’s down to her been so flaming tired and there is literally nothing I can do to help her or us right now. I have looked on the rls pages and I am feeling 95% confident that this is it, but it’s trying to get someone to believe me and take me seriously.
I just wasn’t sure if this forum would point me in the direction of someone who had been there, got a diagnosis, then help and seen improvements. We are running on empty.x
Hm. Getting sufficient blood given your story may prove a hurdle. You have to discuss with you gp and - as Manerva suggests - hopefully a paediatrician, they and their team know how to handle young children.
As to the hair washing. Pick your battles and their timing. There is also something like a 'dry-shampoo' (I am Dutch and don't know the English equivalent), cleaning her hair without water. And remember, there is no need to wash hair very often.
Incidentally, have you found the info? And, tere are other patents with young children with rls but they don't frequent the forum. I think they are busy enough once they get a handle on their child's symptoms or when they subside for the time being.
Nicole, I checked. Both rls-uk.org and rls.org have info in rls in children. It may be worth pating the fee for the US membership, they provide far more info. And their info is good and reliable.
Sorry I can't be of the shared-experiences help. My daughter was a bad sleeper until 4 years of age, but as far as I remember she didn't have Rls symptoms. At that time (she's 15 now) I didn't know I had rls and that it runs in the family.
I think you misread or misunderstood. RLS US has some free info but most of their info is only accessible through paying their membership fee, I think $35 per annum? I am not a member, otherwise I would offer to download the info and send it to you privately.
I hope you'll get the referral, sooner rather than later and to a knowledgeable specialist. Not many are in RLS.
Thank you. I haven’t washed her hair for nearly 2 weeks.lol. It’s never normally an issue. She just wasn’t in a good place today. I had a bath with her as I find it easier to wash her hair this way since been pregnant and normally she’s fine. She has bottom length hair so used to it been washed. Today was just odd.
I’ll just have to see what the GP says I think. I am torn between behaviour / temperament and rls. Like I say though, when she’s had enough sleep she’s brilliant, when she hasn’t it’s like devil child, but I can’t force her to sleep. When she walks into my room in the morning, she has her head down and she’s exhausted, she just can’t get back to sleep. Super restless. The info suggests early riding can be a part of rls which is the other reason I question it. I initially just thought it would effect the night, but the early rising.
I think for me it’s about getting an initial referral. In the past they have just referred me to behaviour people but I’ve covered all that now and fully understand sleep, hence me been at a loss. I just need a referral to get past the Gp. It might just be that I have to pay private if they don’t refer on the nhs.
Hi Nicole, I appreciate how much you're struggling with this. Some of what you describe sounds as if it comes within the bounds of what you could call a "normal" range of behaviour. It is a "range".
However, that makes it difficult, because symptoms that fall outside the "normal range" might be difficult to spot. Additionally, she won't yet have the language skill to articulate her experience.
I had 3 daughters, the middle one was similar in some respects to yours and was always difficult from the age of 2 and remained so. It was I believe a "normal" variation and was partly a matter of temperament.
(I knew this because she shared some characteristics with her mother)!
However, there are some aspects of her "symptoms" that sound "suspicious" to me. I have also read from members on this site who were repeatedly told they had "growing pains" when they were young, and were subsequently diagnosed with RLS in early adulthood.
Whereas normally, for an adult, the best person to see would be a neurologist, in your daughters case a paediatrician (paediatric specialist) would be most appropriate. Paediatric medicine is a discipline in itself and they will be well used to diagnosing a range of conditions in children using methods an adult neurologist may not have the same skill in.
Hello Elocing, I happen to have come across this recently whilst researching RLS and iron. I don't know if it is relevant to your situation but I offer it anyway.
I am making the response not having read the other replies so that my response will be unbiased. Movement disorders of sleep are very inheritable. It does not sound necessarily, that your daughter may have restless legs but perhaps periodic limb movement disorder of sleep. This is also a movement disorder that often accompanies restless leg syndrome. The treatment for it is precisely the way we treat restless legs and for young children it will often be with iron supplementation which can be extremely effective. My granddaughter at 11 years of age developed this problem of sleep and she is now symptom-free because of iron supplementation.
The reason why you are getting strange looks from your daughters position is that in medical school at least in the United States, very little core education is provided for physicians on the subject of sleep medicine. It is not within your doctors paradigm, that sleep problems should exist for young child! But it does sound like she does have a movement movement disorder asleep which can be very effectively is simply treated.
If this were my child, I would have a lab order prepared for a serum ferritin level. In order for the ferritin level to be “normal “, it must be a minimum of 50 ng/mL and not simply within the normal range which typically is a very broad spread something on the magnitude of 10-250 ng/ML. If it is below 50, you want to get it up to close to 100 so you would start giving the child oral iron supplementation 2-3 times per day for a month or so then recheck. You will likely see a gradual improvement in symptoms as has been my experience with a number of patients. You will have to get a professional to help you with this and to order these lab tests and it may very well be contingent upon a diagnosis which will require a attended sleep study for that to happen! There is also a test call Actigraphy that might be available for children as well and they wear a little motion sensitive device on their appendage arm or a leg during the night and that also can be helpful in arriving at a diagnosis.
You do not sound crazy at all and you have no reason to doubt yourself… Your observations are right on the mark and you were describing a movement disorder asleep name ling periodic limb movement disorder so go out there and find someone to help you get a sleep study done and a serum ferritin level as well, probably in that order logically. I hope this is helpful to you but please seek the advice of an attending physician who has experience in sleep disorders. it’s best not to start iron supplementation without the serum ferritin level First because if the ferritin levels are actually normal or high, giving additional iron could be harmful… Very harmful so testing is important!
I think you should get advice from a pediatrician before loading up a 3 year old with iron supplements. I have learned from many people that iron is dangerous if you get the dosage wrong. Incidentally for adults the desirable ferritin level is about 350 according to Doctor Buchfuhrer but you need an expert on young kidneys before you do this. Doctor Buchfuhrer may be able to advise on a specialist in this area. It sounds like Professor Walker might be able to help if he has any experience with children.
In the meantime I have traced most of my RLS to food intolerances. Lactose springs to mind. I have to avoid real milk and be very cautious with butter on my bread or yoghurt. Lots of child foods seem to be milk based so it might be hard work avoiding lactose but you might be lucky and find one cause like that. If she's a bit of a grump she might get really grumpy if she can't have her daily caffiene dose. Limit her to one can of Red Bull per meal (LOL)
Seriously, I avoid onion and garlic, apples pears gluten and lots of other things but from what's allowable I still manage to enjoy eating. Its a variation on the FODMAP diet that is designed for irritable bowel syndrome patients but seems to work for some RLS victims. I expect it will be very hard to explain to her that her horrible legs might be related to what she eats. From my experience she needs to be on the diet for at least 12 weeks before you can eliminate food as a cause. Some people have found that a vegan diet relieves their symptoms but I am allowed all the meat and eggs I want.
If you want details I can send you more. At least this is something you can start doing right now and there are no dangers.
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