Hi there! Came here out of desperation. My soon to be 2 year old has had terrible sleep since day 1. He is extremely hyperactive, and would be up in the middle of the night for hours. We tried every natural syrup or solution recommended by doctors. Finally saw a neurologist and he suggested RLS. We are due for a sleep study but I am convinced he has it. Since last year we have done few blood panels, genetic testing and implemented good sleep hygiene but nothing seems to be working. His initial ferritin level was 3, after 8 months of daily iron is now 28. His iron, top limit 94, so very high. We have also been doing daily probiotic, orange juice with morning medication, vitamins at night and morning, fish oil and vitamin D. He has tested positive for a gene mutation that was inherited from me, but we were told is benign in his case. Dad is ADHD. My question is what else can we do to help him?
He wakes up screaming in pain, kicking his legs, scratches and moans and is up for hours as I can feel his calves throbbing, and see his legs constantly jerking throughout the night.
Edit: he has had an EEG done and is not epilepsy related.
I am being told it's all in my head......
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OrangeDino
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I see melatonin listed on your profile. That can make RLS worse. Was the gene one that indicated a propensity for RLS? You say iron top limit 94 so is high. Do you mean serum iron? And is 95 his value?
He should take his iron tables with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it at the same time at night so it is taken 24 hours apart. It should be taken 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 he should take them at least 2 hours apart from the iron since they interfere with the absorption of iron. . It takes several months for the iron tablets or iron infusion to slowly raise one's ferritin. Ask for a new blood test after after 3 months since he is taking iron tablets
As far as a diagnosis of RLS. as far as whether he has RLS. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. In any case it sounds like he has PLMS which is treated the same way.
If you haven't joined the RLS Foundation you should as it only costs $40. They have Handouts "Healthcare and Your Child with RLS" Also a patient brochure RLS guide for Children. Also, 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 uptodate on it as yours obviously isn't at Https://mayoclinicproceedings.org/a... They have a section on children but it is worth reading in its entirety.
Above all don't let his doctor prescribe ropinirole (requip, Neupro) or pramipexole (Mirapex, Mirapexin, Sifrol). Gabapentin is now the first line treatment for RLS and also treats nerve pain if that is causing his pain.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in.
Hi Sue! Thanks, yes Serum Iron is 94, he is just little over that, but seems ferritin absorption is not ideal. We live in Canada but we are currently in Romania doing testing. Yes, he checks all those boxes. For some reason it starts 2-3 hrs after bedtime then gets better around 5 am. We did try melatonin for couple months but it did get worse with it so we stopped. The gene does not impact RLS, no one in my family has it as far as I know. Thanks !
Meanwhile some things that can make RLS symptoms worse for some people are , sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include moderate exercise, weighted blankets, compression socks, elastic bandages, magnesium glycinate, 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun and listening to music.
On changing his diet, however discuss that with his doctor.
Trust your instincts and don't let ANY doctor tell you it's in your head. Mothers are usually right!You should try to find a sleep clinic and get help there. They are more familiar with RLS, which can DEFINITELY affect babies and children..
Melatonin, sedating anti histamines, benadryl, most cough medicines will all worsen RLS so should be avoided.
You should also make sure your toddler has good probiotics to improve his gut microbiome.
There aren't really any meds suitable for children, which is why raising serum ferritin is normally the best solution.
Hopefully a sleep clinic may be able to help your little one.
My son was diagnosed with Periodic Limb Movement Disorder (PLMD) - a related condition -at 13 months old. (I too have it so there's the hereditary element).
Your son may also have PLMD if his legs are jerking throughout the night.
It’s good you’re having a sleep study so you can learn exactly what’s going on.
Generally, the first line of treatment is iron therapy. Many children respond well to iron therapy (either oral or intravenous).
If your son has been on supplements for 8 months and his ferritin is now only 28 that may suggest an iron absorption problem.
Testing for celiac disease may be worthwhile.
If his dad has ADHD, it may be that he too has ADHD. That would explain the hyperactivity.
There is a strong correlation between ADHD and RLS / PLMD. However sometimes RLS/PLMD can be mistaken for ADHD because sleep deprivation can result in the same symptoms as ADHD. Addressing the sleep issues first would be the way to go.
People with these conditions also have sleep problems – difficulty going to sleep and staying asleep.
Some vitamins can promote wakefulness so it may be better to give vitamins in the morning.
You also say your son takes morning medication. Some medications trigger / exacerbate RLS.
My son has severe PLMD and probably ADHD (inattentive subtype). We are just awaiting a formal diagnosis for the ADHD.
He has taken melatonin in the past which doesn’t seem to worsen things for him and helps with sleep onset.
Some people find that melatonin gummies work but that wasn’t our experience. I find liquid melatonin compounded by a pharmacist best by far.
My son was prescribed benzodiazepines (temazepam and clobazam) when he was around 2 or 3 years old, then when he was four or five, he was started on gabapentin.
Recently he has added in a small dose of clonidine, which helps with sleep onset, and also anxiety. It is also sometimes used for ADHD.
It’s a difficult decision to start such young children on prescription medication but sleep deprivation can have serious consequences also.
Here's a guide to treating RLS put together by some of the leading experts in the field. The section "special circumstances" has a section on children.
Thank you for you reply. Sorry you are also going through this. Yes, medication is always such a difficult decision but in some cases it's needed. He has never had issues going to sleep, it's always the staying up for hrs in the middle of the night, tossing and turning and scratches his legs until they bleed sometimes. It's so hard to see. May I ask where are you based ? I know that they usually do not want to give a diagnosis so early....but I can definitely see he is different than his peers. We suspected autism in the beginning but several doctors excluded it cause he is a social dude, and verbal, no stimming etc.
Please try giving your son children’s iron in the form of ferrous bisglycinate. Give it to him one hour before bed on an empty stomach. RLS has little to nothing to do with ferritin (unless you’re talking levels between 400 to 600). It has everything to do with the diurnal variation in blood iron. We with RLS have a genetically lousy dopamine transport system when compared to non-RLSers. We also have very low brain iron stores so we rely very heavily on that free-floating blood iron. Blood iron drops precipitously at night with a nadir of midnight - probably right when your son cries out. It begins to rise to decent levels again around 6am. Iron is the grease and glue that keeps everyone’s dopamine transport system chugging along. The non-RLS world is not affected by this night time drop in iron because they have plenty of brain iron to draw from - we don’t.
Please don’t give your son iron during the day if you want to try this neat little trick at night. The day time iron will reduce his ability to absorb the night time dose. You could even give it to him right before bed. That is actually what I would do. All you’re doing is sneaking some iron to his brain when it is most needed. You could even try the ferrous sulfate at night since you have it in the house. It’s not as bioavailable as the bisglycinate but he’s so young he should have no problem breaking it down. Good luck!
Yes, please, give it a go as soon as possible. Give him at least 100% of the recommended daily allowance for whatever iron you choose. Should work that very first night if it is going to work for him. Also, you might want to try a gluten free diet with him for two weeks. There are reports of links between gluten and ADHD. Dairy as well, but to a lesser extent than has been reported with gluten.
I put all of the above in the “no harm, no foul” category. If he continues to wake up I would allow him to get out of bed and walk around for a bit and see if that helps. You can call it “Our Time..” Then maybe sit on the couch with him and turn on the TV and see if he falls asleep more easily and comfortably.
When my son was about 5 he developed a fear of sleeping because of nightmares. I said to him “nightmares”??? “Nightmares are nothing..” Then I would turn the TV on (yes he had one in his room) to the Weather Station and say “look at this Category 5 Hurricane - now this is a nightmare!” We watched the Weather Station together for many months. He really enjoyed those massive storms and it always put him to sleep fairly quickly, I miss those days. He is now 24…and no longer has nightmares and rarely turns on the TV - day or night. 😑
Thank you so much! Yes I need to try it asap. Poor thing woke up today even from his nap and cried for 40 mins, scratching his legs, saying "help me" and "boo boo leg". I just feel helpless 😔 Your son must miss those days as well, even if might not know it yet or say it out loud. Your story fills my heart with joy....I too wish this pain will end for him and I can help him with that.
Wait, what, he woke up from his nap with RLS??? Possibly RLS. Did you withhold his iron today which you would normally have given him before his nap? Is this the first time that has happened to him during his nap?
yes i did stop the iron couple days ago to get bloodwork done. i thought it might have something to do with it.....naps were fine lately but i guess i had always given him iron for the past 8 months in the mornings so I don't know...as a newborn he slept in increments of 20 mins for naps....waking up screaming then needed to be rocked back to sleep....
So hard to know what exactly is going on. My money is still on low brain iron and genetically lousy dopamine receptors. I would give him the full RDA of iron tonight at bedtime. If it works I would do a twice a day regimen for him. At bedtime and 20 minutes before nap time. I feel “pretty” confident that the iron you gave him in the morning helped with his subsequent naps but then was gone from blood by night time.
Here’s an article you might find interesting. I disagree with them completely when it comes to their statement that the ADHD/RLS brain has trouble calling up iron. I think our brain’s absorption of iron is just fine, it’s storage for a rainy day that’s the problem. Plus, there’s some studies that show that we with RLS (and thus possibly ADHD) have mitochondria in our brains that are “hogging” iron. More so than the average bear. Bottom line is, there’s less storage of available iron in the brain for our dopamine transport system. Here’s the article, for what it’s worth: athletesanctuary.com.au/iro....
Oh this is so interesting! Yes, I am going to try it asap. I have a meeting with his neurologist on Tuesday so I am trying to prepare for that. I am gonna ask about iron overload as well. Since his Serum iron is now very high, to the top limit....
I’m not surprised. I read another article today that talks about ADHD and a hormone called hepcidin. Hepcidin is the iron gatekeeper. It’s what sequesters a lot of freely available iron out of blood towards evening as well as whenever it senses the body is under attack ie a virus, chronic kidney disease. The point being to take free iron out of the blood stream and store it so microbes, which LOVE and need iron, won’t get any and hopefully die. Problem is, not only microbes trigger increases in hepcidin. So yes, your son may have elevated hepcidin because that iron gets sequestered away and hepcidin won’t allow any to be released from those stores. So sad, iron, iron everywhere, yet so little for our dopamine receptors.
Here’s someone who did a twice day regimen and she was able to absorb her night time iron and rid herself of RLS. It worked well for two years for her until she started getting early morning RLS awakenings and switched to both doses at night. healthunlocked.com/rlsuk/po...
I'd second Amrob although personally I'd say coeliac testing was essential. As you've already had genetic testing you may have ruled out coeliac and non-coeliac gluten sensitivity, but likely only basic coeliac blood test/biopsy will not be enough to rule out gluten definitively (misses too many, especially in earlier stages). Did you get COMT or MAO results with genetic test? Affects dopamine and other neurotransmitters. Could also consider dairy, which will be a problem anyway if coeliac or gluten affected (at least temporarily), and it is likely that vitamin B12 and folate testing has been inadequate as it usually is. Ideally you'd want serum B12, serum folate (B9), active (holotc) B12, anti gastric parietal cell antibodies, anti intrinsic factor antibodies, homocysteine and MMA (methylmalonic acid). Genetic test may have included MTHFR and genetic errors of B12 metabolism such as MTR - there are many genes involved and new research ongoing. Most will show either high homocysteine or high MMA or both, but equally all tests may appear normal. Don't give up! Best wishes
Thank you so much for your input. We did WES testing as he had minor delays in his development. Came back positive for a gene called SETD1B, which is very new in the rare disease findings. Couple months later we found out I have the exact same mutation and he inherited it so they called it benign since I am not affected by any Neurodevelopmental delays ( no RLS in my family either). He caught up on his delays and other areas, but still I did not find answers for his sleeping issues and other things that he is still behind or different than his peers (executive functions, emotional regulation, aggression, sensory, sleep, hyperactive, no attention spam, elopes, etc).....I will try and push for more testing as you suggested.
Those symptoms do sound as if they could be due at least in part to a B vitamin dysregulation. I am not familiar with SETD1B but I see it involves a methyl process, so it may be that he has too few methyl groups or too many, and other SNPs may already be affecting those same processes, slowing things down more or speeding them up too much. Homocysteine and MMA etc sound like a good step. If it is new they probably haven't yet looked at how it will impact the function of other genes and epigenetics and of course the fact that you are seemingly unaffected doesn't take account of his father's ADHD and any genetics there (also some links to COMT and methyl group function). Cheers
It is vital/sensible to check for comorbidities such as Coeliac disease . I would think intravenous Ferric carboxymaltose would be the best thing to try . It is safe as long as the ferritin is less than 500ug/L and the Transferrin Saturation is less than 30%. Maybe discuss this with the paediatricians. Very best wishes to you all xxx
Hi Kakally, how are you? Did you see the post where OrangeDino said her son’s ferritin was at the upper most level of normal due to just iron supplementation? And now she’s concerned about iron overload? Given these facts do you still think an infusion is a good idea?
yes quite possibly . 100ug/L may well be the ‘normal’ limit for those with no RLS but many RLS people require 2, 3 or 400ug/L to keep their symptoms under control or at least much less severe . Obviously only approximately 60% of RLS sufferers will be good ‘iron responders’ but if the little one is fortunate to respond well to i-v iron then possibly can be helped . (Prof. Chris Earley , I think, postulates that people have an individual personal symptom threshold of ferritin level , below which their symptoms become much worse . I know I am an adult, but mine is 480ug/L. Do every time my ferritin falls below this , I am permitted to hav another ferric carboxymaltose infusion as long as my TSAT is less than 45%. Children may obviously clinically behave differently or perhaps similarly to adults , and ferritin = 500ug/L is their top limit for conditions such as thalassaemias when they require regular iron infusions
The more I read, the more confused I become, rather than the other way around. I’ve come to accept the hypothesis that early on we with RLS had iron deficiency which led to an increase in presynaptic dopamine and in response a down - regulation of our D2 receptors. Scientists have seen all this on autopsy and specialized scans.
Yet, for most of us, it remains a syndrome of the night, despite the fact that our receptors are lousy 24/7/365. What happens at night? Both blood iron and presynaptic dopamine drop…significantly…to the tune of 30 to 60%. Iron with a Nadir of 12am and dopamine 3am. Still, the descent begins significantly around 8pm, but the lowest is later. Sifrol helps initially because it adds to that lowered dopamine pool and the DAs work because they beat our pathetic receptors to pump out more post synaptic dopamine. In the long run, both will down regulate the receptors yet further. So my recommendation is always to try the other chemical that goes down at night - iron. For many it works, especially if they’re drug naive and for many it doesn’t work or not enough.
Taking some iron at night should be the first recommendation out of the mouths of all the Regulars on here. AND, it should be explained that it may provide immediate relief the way the DA’s do. Then it should be explained that if there is no immediate relief they can continue to take iron in the hopes that raising ferritin will help. Lastly, I have no problem explaining to people that forcing their ferritin up to the likes of 600 very well might lead to a substantial, albeit temporary, increase in brain iron and relief. Very recent articles describe how a 1000mg infusion of iron does lead to increased brain iron, shown via MRI, with corresponding relief in symptoms in some patients. It seems that as you force someone’s ferritin to over the 400 range, and more like 600, there’s FINALLY a spillover storage effect in the brain.
All this can be explained to newbies like OrangeDino, but in that order and with the caveat that they should discuss with their doctor on the outside chance they have an iron overload disorder. However, if their doctor has already prescribed iron (like in the case of OrangeDino’s son) and they’re taking it during the day, why not tell them to take it at night on an empty stomach before bed? Just a few weeks ago this gave Pennygates immediate tremendous relief. Yet the Old School people on here care more about being right than helping people, so it’s left to me to try to tell as many newbies as possible about this.
If more people would pick up the gauntlet, then I could make a graceful exit. I’ve been spouting this same information for over 10 years - back as far as the Dark Ages of NightDancer. “There’s a season.” Most of the oldsters like me have left except for the rare appearance. My appearances are on the wane - because it’s time - it just is. The iron at night thing is a gift from above. I don’t know who first stumbled on it but it wasn’t me. I read it on a blog similar to this one. I quote: “Just take some iron at night, there’s something about that free floating iron that seems to help.” My RLS was so bad from melatonin usage I would swear it was in my eyeballs. I probably would have done myself in but for the iron. Such a simple thing could help so many RLS sufferers yet “management” refuses to acknowledge the potential immediate effect and relief that ferrous bisglycinate can bring. So pathetic.
Unfortunately the nighttime ferrous bisglycinate didn’t work for me . It’s like there is no ‘one thing’ works for everyone. I am sure that as they investigate more thoroughly the problems, whether it’s the neurotransmitters or plus the part deranged brain iron metabolism has to play , the mechanisms involved will become clearer. Why the iron gets in to substantia nigra but its excretion out appears to be accelerated. There is too much we don’t yet understand fully. I do wish the U.K. weren’t so totally disinterested and lacking in compassion for us sufferers and would do even as much research as the U.S. We all deserve genuine care……. Best wishes to you SalemLake.
I’m sorry that it didn’t work for you, but I think you miss the point. When giving advice to newbies, especially those inquiring about iron, is to tell them all the different steps there are, but that they really should start out with the first step, which is the iron at night thing. Then if that doesn’t work there’s step 2 and step 3, then lastly an infusion if they think that is something that makes sense and might work for them. Out of all of my bizarre conditions, and I have a boatload, RLS takes the cake. A syndrome that goes by the clock??? My RLS is set to midnight or there about. Why do I want to “start out” with a sledge hammer that will raise my ferritin to crazy high levels 24/7 for a condition that comes out at night like a vampire. The answer is I don’t want to until I feel that is my last resort. So even though it didn’t work for you it is a viable treatment and one every person who comes on here should be made aware of, as a first thing to try. It doesn’t matter that “no one thing works for everyone.” What matters is we’re all open to anything, especially when numerous people report success with it, like magnesium. And shame on me for not mentioning magnesium more often. I’m not sure why it works but my guess is that it’s a dopamine antagonist and like any good dopamine antagonist will do, it up-regulates our receptors. That is probably the ultimate solution to RLS - to take (or do) benign things by day that antagonize our receptors like anaerobic exercise, severe calorie restriction, magnesium or berberine (both short-acting) then iron at night. And of course no eating after 7 to 8pm. That not eating at night thing has helped a lot of people on here as well. Bedtime!
Absolutely the first thing is for the doctor to listen to the patient with knowledge and compassion so they feel listened to. —- full ‘history’ taking then —- differential diagnosis— then send for blood test ,iron parameters and general tests…. And give the patient a ‘handout’ e.g. ‘Bare Bones of RLS’ or similar…. Then treatment 1. Iron bisglycinate at night etc. 2. Then oral iron if ferritin below 75ug/L. Then straight to intravenous iron , If ferritin is above 75ug/l, with moderate or severe symptoms and TSAT <45% . (as you cannot usually raise ferritin significantly with oral preparations or only very slowly … )
Intravenous iron saves time, suffering and money, Give it early and you find out who are iron responders . If the patient is , then you’re on the right track to help them. If not , then forget iron (well largely) and get on with everything else. Alpha 2 ligands, suitable opioids and only DAs as more last resort and with very careful monitoring.
Of course in that Bare Bones document the patient will have received in that first consultation and read again and again , will be magnesium, other ‘over the counter’ things , behaviours to avoid or encourage , drugs to avoid .
I don’t think I have missed the point.
I don’t think you have either.
I think we are all trying to get better education of medical personnel and better treatment for ourselves and other sufferers .
oh thank you for sharing! Sorry to hear about your pain, must have been challenging. Yes it is really hard to watch him cry in pain not knowing what to do....did it get better for you in time or worse? I worry about him so much....he seems so dysregulated due to lack of sleep :(.
My problem back then was no one really knew what it was. As I grew older, the worse times for me was that time of month. (Luckily he won’t have to worry about that)
But I never had back pain or cramps, it was severe leg pain. Strange. I used to take Motrin 800 mg. Helped a bit. It seemed like physical activity made it worse. I could never really keep up a workout because I’d quit because of the pain.
The only hope or advise I can give you is that my son seemed to be on the same path as a toddler but somehow dodged the bullet. The nights crying lessened. He’s 27 now and fine. Lasted until he was around 5.
I would do the same thing my dad did plus give him a little bit of children’s Motrin.
That soothing hot water then cold rubbing alcohol really helped me. Something about cold/ hot. Does something to the blood vessels.
But maybe try icy hot roll on. They make a kids version. Maybe ask his pediatrician.
And make sure he’s hydrated and has proper electrolytes (K and Mg)
Thank you so much for your suggestion! Happy to hear abt your son! I am willing to try anything at this point. We do magnesium lotion at night, seems to be helping here and there. I am praying that he outgrows this too. Take care!
I'm afraid I have no solutions for your problem... nothing I do can be done with a child that young ... Although I am curious as to how the sleep study went?🙏
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