14 month with RLS?: I have concerns my... - Restless Legs Syn...

Restless Legs Syndrome

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14 month with RLS?

Motorbikechick profile image
19 Replies

I have concerns my 14 month old is suffering from RLS. I've spoken to his Dr who has dismissed is as it's uncommon. I suffer with this myself and he kicks his legs like I would and will moan, sometimes cry if it keeps happening and it's always when he's relaxed, breastfeeding, before he falls asleep and during the night.

I've started giving him iron, he's been on this 9 days and I've not noticed an improvement.

have you any suggestions please

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Motorbikechick
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19 Replies
Madlegs1 profile image
Madlegs1

Sorry for your troubles.

Yes-- children do experience rls-- usually dismissed as growing pains, or fidgety child or even more dangerously as ADHD.

Good to be supplementing iron, but be careful with dose for child.

Majorly, check for triggers-- especially with the breastfeeding. What you have goes straight through.

Medications, foods and drinks all can set it off.

Keeping a diary can help pinpoint triggers.

For me they are raising agents , as in Crunchy bars and biscuits and most buns. Alcohol and artificial sweetener, colourings are also bugbears for me.

Different people find different triggers.

Do not give the child drowsy medication like Benedryl, as they will skyrocket the RLS.

Good luck.

SueJohnson profile image
SueJohnson

Welcome to the forum. You will find lots of help, support and understanding here.

Yes babies have RLS. You should join the Restless Legs Foundation at rls.org. It only costs $40 and has a monthly magazine. It is a US organization but anyone in the world can join. They have several publications on RLS in children.

Have you had his ferritin checked? If so, what was it? This is the first thing his doctor should have done. Improving his ferritin to 75 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see his doctor ask for a full iron panel. Stop giving him any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and he should fast after midnight and have his test in the morning before 9 am if possible. When you get the results, ask for his ferritin and transferrin saturation (TSAT) numbers. You want his transferrin saturation to be over 20% but less than 45% and his ferritin to be at least 75. If they are not, post them here and we can give you some advice.

If you haven't had this done for you, than you should do it too. You want your ferritin to be over 100.

What iron are you giving him - the brand and the mg?

What are you taking for your RLS? Is it under control?

The following is mostly for you. Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

Motorbikechick profile image
Motorbikechick in reply to SueJohnson

I take magnesium for myself, which has helped, not letting my legs get too hot helps too but I still suffer some times.

The Dr has never investigated myself.

As for my son, he said he didn't want to do a blood test as its very traumatic for him.

He is taking 1 ml of nature's aid mini drops iron, sugar free

Madlegs1 profile image
Madlegs1 in reply to Motorbikechick

Just reflecting -- at 14 months, he's likely on solids as well as yourself.A lot of baby foods are high in salt and sugar and other nasties.

Do check the ingredients very forensically. Note that " no added****" just means that ***" is very probably included- but not asan original ingredients, or hiding other worse ingredients.

For eggsample - no added sugar just means loads of artificial sweeteners.

As a matter of interest- did you suffer extra RLS during 3rd trimester--?

Good luck in your detective work.

Motorbikechick profile image
Motorbikechick in reply to Madlegs1

I don't actually remember if my legs were worse at the end of my pregnancy.

He mostly eats what I eat and I try to choose healthy foods. He does have some snacks but they are low in salt

amrob123 profile image
amrob123 in reply to Madlegs1

And also worthwhile looking out for "natural flavours " as this can almost be anything.

Eryl profile image
Eryl in reply to Madlegs1

'No added sugar' can mean that they've replced it with 'modified starch' whch could be worse, as starch all breaks down into glucose under the action of enzymes in the saliva.

SueJohnson profile image
SueJohnson in reply to Motorbikechick

That is a good one but has only 10 mg of iron. I would give him a double dose. Give it to him every other day, as more is absorbed that way, preferably at night at least 1 hour before a meal and at least 2 hours after a meal since iron is absorbed better on an empty stomach.

If he takes magnesium, calcium or zinc in a multivitamin take it at least 2 hours apart since it interferes with the absorption of iron.

Massaging his legs before bed may help him.

Researching it, it is not traumatic to test for ferritin in a baby but you are stuck if his doctor won't do it.

I gather you are not taking anything for your RLS.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin).

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...

Motorbikechick profile image
Motorbikechick in reply to SueJohnson

Ok thank you. Is there a better iron I can give him? He doesn't like to take it but enjoys his multivitamins. If not I will do as you suggest and give double doseHe doesn't take magnesium as unsure what he can have at his age.

SueJohnson profile image
SueJohnson in reply to Motorbikechick

No that one is fine.

ChrisColumbus profile image
ChrisColumbus

Welcome to the forum.

While Sue has recommended the RLS Foundation in the US, please see this from RLS-UK:

rls-uk.org/rls-in-children

Joolsg profile image
Joolsg

It's not uncommon. But GPs in the UK aren't taught anything about RLS.As RLS affects 10% of the population and the vast majority report symptoms started in childhood, then there will be lots of babies with RLS.

As Madlegs advises, check for triggers.

If you're breastfeeding, whatever you eat and whatever meds you take, will affect the baby.

Common food triggers are caffeine, sugar, fizzy drinks, alcohol.

Anti depressants, sedating anti histamines, beta blockers, statins and PPI meds are the meds that worsen RLS.

Try massaging the baby's legs with baby oil.

amrob123 profile image
amrob123

Children most definitely can and do have RLS. I noticed periodic limb movements in my son at 11 months and he was diagnosed with PLMD shortly thereafter.

Iron panel (and iron therapy) is usually the first thing a sleep specialist/neurologist will look at (if they suspect it's RLS and not something else). In fact, even despite my strong history of PLMD, my son's neurologist still gave him an EEG to rule out other movement disorders like epilepsy.

I really encourage you to have his iron tested / see your doctor before giving your son iron. Iron should really only be given under doctor's supervision because giving it where it's not needed can be harmful. Knowing your son's baseline readings will also show you whether he is benefiting from /absorbing the iron. This can be helpful in indicating conditions like coeliac disease.

On other forums, a couple of people have found TENS type devices and infrared lamps helpful for their child's RLS. I have just ordered a TENS unit for myself and my son.

As MadLegs says, watch for dietary triggers. Just by way of example, my son is unable to tolerate mustard powder that appears in curry sauces and spice blends. There are many examples of things that are hidden in ingredients lists that may be problematic for RLS. It can take a lot of time and effort investigating but well worth it if it means minimising the RLS.

Motorbikechick profile image
Motorbikechick in reply to amrob123

Do I need to push for a referral for my son to see a neurologist?

I've no idea where to start regarding food. What do you cut out first and for how long before seeing a difference?

amrob123 profile image
amrob123 in reply to Motorbikechick

I'm in Australia so perhaps a UK member can explain the process for referral to a neurologist.

Personally i see a sleep specialist, while my son has seen both a sleep specialist and neurologist.

I haven't found that diet takes RLS away completely but i know that the less processed our diet, the less likelihood of RLS. I have done two very strict clean diets of 8 or so weeks and both times i did these, my RLS scaled right back (and my PLMs may well have reduced also but more difficult to say on that front as they happen when i'm asleep).

I tend to make 95% of meals from scratch using only whole foods. Over the years i have identified a small number of processed foods that i don't react to and so feel okay eating these. For example there's one brand of chocolate biscuit that i can eat safely, whereas another brand gave me terrible RLS. Some other things that are particularly problematic for me is parmesan cheese and ice-cream. I also avoid most foods that are high glutamate (like parmesan). A complete list can be found online. Different people have different dietary triggers.

Unless you want to do a complete elimination diet, then i'd suggest eating only whole foods (no processed, no additives) and then introducing processed foods in one at a time. As a general rule, the fewer ingredients something has, the better.

The good thing is that because your son is so young, an elimination diet wouldn't be too difficult at this stage. It gets much harder as they get older and develop a taste for junk food!

Madlegs1 profile image
Madlegs1

We had a case a while ago -- 5 yr old with RLS. After a lot of toing and froing ,we figured it occurred mostly at weekends and holidays..

Times for treats such as ice cream, sweets and sticky buns!!

We made it a detective hunt to find which were the baddy foods were. The child sorted it very quickly!👍💚

ACRELANE profile image
ACRELANE

Hi, really sorry but never heard of someone that young being diagnosed with RLS! It can certainly be hereditary, I would email a specialist doctor on RLS and ask for advice!

For your sake I hope it isn’t RLS.

Swillet50 profile image
Swillet50

Is he close to a TV or wifi? I turn my router off every night. It is definitely a factor. Or even a motorized bed

Madlegs1 profile image
Madlegs1 in reply to Swillet50

I find the aluminium colander over my head at night keeps all that stuff away!💚

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