Hello all,
My 20 month old daughter is suffering with what seems like RLS. It doesn’t run in our family and her diet due to health complication is iron deficient (waiting on test results to confirm this). My question is has anyone had experience with a child having RLS that is fully relieved by iron supplementation / infusion? It’s waking her for hours a night and I’m nervous she’s going to be affected by this negative sleep impact. Any insight appreciated.
Firstly- what are her symptoms?If fidgety and distressed- then check for worms and dose accordingly.
Otherwise,look at her diet. For any of the triggers- medications such as antihistamines, or colourings in drinks etc.
But I'd go with worms firstly. 🤔
She basically grabs my hands and gets me to hold her legs in the air. She just twists and turns and kicks her legs. And I can see different body parts twitching sometimes every 30 seconds.
She eats no meat, eggs, dairy or iron fortified foods so that has led me to thinking RLS! She never puts her hands down her nappy or anything to signify worms!
High possibility of iron deficiency.Are there pediatric iron supplements?
Yes there are iron preparations that can be given to very young children.
Does your daughter have EoE? The foods you mention that she must avoid are all the ones that are high in B12 so adding a little B12 supplement might be wise as well. If it is EoE there is a very good liquid steroid (that was originally made to go inside an inhaler) that can be mixed with a little sugar or honey (forget the sucralose) and given to your daughter to swallow. The sugar/honey helps to keep the steroid hanging around in her esophagus where it is needed. I only recommend the steroid if the EoE is not controlled via diet
Also she’s not on any medications or anti-histamines!
The Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... has a section on children including iron. Click on the 3 bars to the left and then special circumstases to get to it.
Many children with iron deficiency respond very well to iron supplements.There have been many over the years.
Children with serum ferritin below 50-75 and RLS will need supplements.
However, finding out the levels can be the problem as you'll need to get blood tests.
As you mention her diet being poor in iron due to a health complication, your GP should now discuss it fully with you.
Most GPs are unaware of the link between low iron and RLS so you will have to insist they take you seriously and look it up/ research.
Gentle iron supplements will probably make an enormous difference.
Childhood RLS is often misdiagnosed as ADHD so stand your ground. The fact it's happening at night is a key point.
Massaging legs with a dilute magnesium oil may help your child relax and fall asleep until you raise the serum ferritin levels.
If there are malabsorption issues, a good probiotic may also help but again, discuss with the doctors treating the other health issues.
In the meantime it may be an idea to join rls.org, the US RLS foundation. It was set up by Karla when her child had RLS.
It costs $45 but they have lots of leaflets and publications on childhood RLS which you can access and print off to show your doctors.
The UK is many years behind the US on latest knowledge and treatment. RLS isn't taught at medical school or during GP or neurology training, even though it affrcts over 1 million people in the UK.
There is hope. We have had reports of dramatic improvement in children as soon as their ferritin levels are raised.
Yes, a significant majority of children diagnosed with restless legs syndrome/ periodic limb movement disorder will have the symptoms relieved via iron supplementation.
This a) told to me by two pediatric sleep specialists we have seen for my son's condition b) by knowing people whose children have had complete abatement of symptoms after iron therapy and c) through extensive reading on the topic.
However a small minority will not improve and will either live with it, or take medication.
It sounds awful for your daughter and for you to have to watch her suffer. The info given by other replies is great.But it doesn’t sound to me as if it should be a DIY fix. I would never advise parents to give medicinal products to a toddler without advice and that includes products you rub onto skin unless it has a paediatric licence.
But it sounds as if she should be under paediatric / dietician care & at the very least GP care.
It is great to go armed with all the info about iron though & the fact it looks like RLS to you.
Low iron won’t just impact on RLS. It will impact on many other aspects of her body & won’t be good for her.
Is she under care for her underlying health condition? Do you mind me asking what it is?
It sounds as if you both need proper help. I am concerned you appear not to have it.
Are you in the Uk & can you request it?
A plant based diet, especially one attempting to elevate iron levels, is likely to lead to oxalate overload, which my experience indicates causes RLS because it interferes with daily iron distribution within the body. Many RLS sufferers have found relief by pursuing a low oxalate diet. It was about seven years ago that I had the perception that I could switch my RLS off by avoiding high oxalate foods. In the subsequent years I was able to work out some of the mysteries that prevented me from getting complete relief (see #2 through 5 below). In more recent years I have come to believe exposure to fluoride is the root cause of our iron deficiency because it interferes with absorption of iron in the digestive tract and causes the body to express hepcidin which causes the body to further reduce iron absorption from food.
MY TEN STEPS TO ACHIEVE COMPLETE RELIEF FROM RLS
(AND A NEW LEVEL OF GOOD HEALTH)
1) Eat a low oxalate diet.
2) Take magnesium supplements but not magnesium glycinate. Excess glycine seems to stimulate the liver to produce oxalic acid inappropriately.
3) Avoid gelatin and gelatinous soups and stews because of their high glycine. Be mindful of animal protein that may be especially high in glycine. Collagen supplements probably should be avoided.
4) Eat organic vegetables and fruits. Non-organic are typically sprayed with oxalic acid solution post harvest to preserve freshness and nutrients.
5) Avoid eating asparagus. Apparently asparagusic acid operates similarly to oxalic acid.
6) Avoid refined, bleached and deodorized cooking oils made from seeds. I believe these oils have made me especially susceptible to fluoride poisoning. (I mostly use unrefined, virgin coconut oil and cold pressed olive oil. I also enjoy butter and ghee.)
7) Limit wheat products to those made with unenriched, unbleached, unbromated flour. Eat unenriched, organic pasta. When using commercial yeast instead of the natural leavening of sourdough starter, allow the dough to rise unrefrigerated for 12 to 18 hours, or more. (I typically buy King Arthur flour.)
8) AVOID CONSUMING FLUORIDE! Drink properly filtered or purified water. Avoid non-stick cookware that isn’t PTFE and PFOA free. Avoid canned foods unless the can liners are free of fluorocarbons. Don’t drink bottled or canned beverages made with fluoridated water. Wine, especially from California, is typically high in fluoride. Many pesticides are high in fluoride, so eat organic. (If you drink water purified by reverse osmosis you probably should add back appropriate minerals.)
9) You may need to take a break from goitrogenic foods. RLS and oxalate intolerance may be evidence of unusual susceptibility to fluoride and you may have a significantly impaired thyroid. In addition to damaging the gut lining, impairing iron absorption, causing magnesium deficiency and suppressing melatonin production, fluoride has traditionally been used as a medicine to suppress thyroid function. I experimented with avoiding all goitrogenic foods and my thyroid function greatly improved. After avoiding fluoride for more than a year I am slowly reintroducing cruciferous vegetables and the many wonderful fruits of the rosacea family. (I had been wary of eating fruit because of wide swings in my blood sugar. Eventually I realized that, for me, it was the goitrogens of certain fruits, rather than the fructose, which was causing my energy swings.)
10) Whenever possible avoid medicines that stress the liver’s detoxification function. I suspect the RLS augmentation from Pramipexole and similar drugs is due to liver impairment. Oxalic acid is a normal byproduct of liver function and it must be properly disposed of. When liver function is impaired, overproduction of oxalic acid may occur, especially in the presence of high glycine.
Since following these protocols I have returned to my college age weight without trying to lose weight; I feel like I have a new, youthful pair of legs; I experience a vitality I haven’t known in decades; and my severe allergies to dust mites, chiggers and springtime pollens have vanished. Because I’m feeling so much better I am hopeful that I may recover my ability to tolerate oxalates sometime soon.
One final note: virtually all websites offering information about low oxalate diets recommend avoiding all potatoes. I have found red, white and gold potatoes are safe if they are peeled and boiled. I point this out because I hate for people to needlessly miss out on one of the treasures of the vegetable world. Jim Hejl
Can you give me a source for "exposure to fluoride is the root cause of our iron deficiency because it interferes with absorption of iron "
Hi Sue,
I’m sorry if it sounded like my belief is based in established scientific fact. When I wrote the sentence with the words “I have come to believe” I was trying to communicate that this one reasonably plausible explanation for my recent incredible improvements in health is really only a hunch. Just a guess; a possible conclusion where I think the scientists may end up in 5 or 10 or 20 years. I have read a lot of scientific studies, but none that I have seen directly address this particular issue.
THIS IGNORANCE ABOUT RLS HAS TO STOP
RLS OR NOT?
RLS
RLS
Does iron deficiency affect RLS?
