Curing RLS not just treating the symptoms

[MamaBear44]

Thank you for the priceless pages of RLS tips and advice! I’ve been struggling to diagnose my 3 year old son’s sleep issues his entire life. A sleep study reveled his “kicking legs” last year which (we believe) set us on the right path. So far, adding Gaba, 60 mg of iron (Atrium sleep clinic prescribed), magnesium, folate (not folic acid!) and a hot epsom salt bath then a weighted blanket to his daily routine has helped. The grounding sheet seems to help too. He takes a good multi-vitamin (seeking health childrens chewable), probiotic, and fish oils (Bareans). I give him a leg and arm massage, and thoroughly squeeze his legs before bed.

One sleep doctor prescribed gabapentin - which did some of the heavy lifting for him, but I want to FIX what’s wrong rather than just sedate his nerves each night. Gabapentin is a sedative and it’s not made for kids. He’s off gabapentin now and we’re managing symptoms with diet, exercise and good supplements. (It’s a lot more work then giving him a pharmaceutical!)

Finding the book “dirty genes” has been a game changer, for us. We discovered that he has the MTFHR gene mutation (my other kids are passive carriers) and I encourage anyone with RLS to get tested and consider treating the root cause in your body/life/routine that may change everything.

Lastly, consider eliminating gluten. I met with 3 conceirge (2 celebrity) pediatricians, that we paid tens of thousands of dollars to see, and they all presented cutting out gluten as one of their foundations to “cure” the gamut of behavioral issues, (and food coloring, diary, sugar next) Then they supplement based on blood/stool/urine tests. It didn’t fix RLS but has helped calm his daytime irritability and focus. Incase that helps anyone?

Now that his rls is under control, I’m seeing a pediatric orthodontist to fix his obstructive sleep apnea, as found by a sleep study. He had his andenoids removed but it’s still there. It’s often missed in children and it’s been hard to find dentists with experience treating it at his age. He’ll likely need an expander and we’re trying a mouth guard in the meantime. We’re 80% of the way there (to perfect sleep) with diet changes and vitamin supplementation

I hope you find the answers you need!

**** Jan 2024 update - my son has had the expander in for 3 months and holy cow - his sleep improved the 2nd week!!!!! He no longer kicks around or moves at all. He breathes through his nose all night and his adhd symptoms and major hyperactivity and aggressiveness at home and at preschool are completely gone. His teachers cannot stop talking about what a different kid he is now. They send other parents with “bad sleeper” preschoolers to me for our orthodontist info. Please get your kids checked for jaw expansion! We dropped all supplements but the multivitamin, probiotic, iron and fish oils

[Hidden]

Thanks for sharing your experience. It sounds as though you have invested a lot of time and money investigating of your son's sleep issues.

In the case of my young son, i was able to identify what was going on because i too suffer from periodic limb movement disorder (PLMD) and RLS.

Did iron supplementation help? I know that in many instances of childhood RLS / PLMD, that intervention alone is sufficient to address the symptoms.

Has your son managed to come off gabapentin following the diet / lifestyle interventions that you have described?

[MamaBear44 in reply to Hidden]

thanks Amrob, he’s off gabapentin (he was taking 1ml of the liquid) and the supplements alone seem to be working.

[Hidden in reply to MamaBear44]

That's great news! I hope the regime continues to work for your son.Can I ask how you identified which supplements to give him (I'm assuming the ones in bold are what's helping)?

[Hidden]

5HTP MAY make the symptoms of RLS worse. Melatonin definitely does. Also, I recommend giving him iron in the form of ferrous bisglycinate in the evening about an hour before bed, preferrably on an empty stomach. This stops my RLS in one hour for one night. You might want to try skipping the Gabapentin one night (with doctor’s permission) and try this nifty little iron trick There are numerous people on here for whom the iron works immediately.

[SueJohnson in reply to Hidden]

One should never skip taking gabapentin as they would suffer withdrawal symptoms.

[MamaBear44 in reply to Hidden]

thank you! He’s off gapapentin and I’ll confirm which iron supplement he takes - thanks for the advice!

[SueJohnson in reply to MamaBear44]

You said it helped a lot. Why did you have him stop it?

[SueJohnson]

Unfortunately you can't "cure" nor "fix" it. You can only control the symptoms. As others have said he has PLMD which is treated the same as RLS. You say 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. Does he meet these criteria? Do not try skipping the gabapentin as suggested as he would have withdrawal symptoms. How much gabapentin is he on? He should not take magnesium nor the multivitamin if it has magnesium within 3 hours of taking the gabapentin as it will reduce the absorption of the gabapentin. Also he should not take the magnesium within 2 hours of taking the iron as it will reduce the absorption of the iron. Has he had his ferritin checked? If not, ask his doctor ask for a full iron panel. He should stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have his test in the morning. 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 his TSAT is within that range and his ferritin is over 75 there is no need for him to take iron supplements. If they are not then he should take the iron every other day, 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 it every day, it should be at the same time so it is at least 24 hours apart as taking it within 24 hours limits its absorption.

[MamaBear44 in reply to SueJohnson]

thanks, Sue - yes, we believe it’s rls. We’re getting more bloodwork done next week so I’ll check his ratios then; thanks for the tip. I’m determined to fix it, not just treat his symptoms.

[SueJohnson in reply to MamaBear44]

I forgot to add on the iron that he should take it with 100 mg of vitamin C or some orange juice as that helps its absorption.

[StJulian1305]

well, just reading your report on your son, I’m amazed. We are in France holiday at our son and family. He has had numerous operations for ulcerative colitis, after 18 yrs of try to fix him, he now has a pouch and getting on with life. Me? Horrible RLS since a child, now 72 realise it’s a complaint not growing pains. I’ll get to the point, the book Dirty Genes, I’m ordering it NOW, as it will be an insight if not a cure. Good luck with it all and love . 💕🇬🇧

[MamaBear44 in reply to StJulian1305]

I hope you find the answers you need to start a course to healing. The doctor that wrote Dirty Genes has a website, called seeking health. Check out the Medical Medium too! People swear by his morning celery juice routine. Don’t give up! In my search for answers for my son’s sleep issues, I’ve been lucky to meet women/moms that have cured their autoimmune diseases, eczema, IBS and other chronic health issues that doctors told them they would need prescriptions to manage for the rest of their lives. It can be done and I’m determined to help my son fix the root cause(s) so he can manage his body (on his own someday) and sleep well throughout his life. Wish you luck!!

[SueJohnson in reply to StJulian1305]

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.

[StJulian1305 in reply to SueJohnson]

Hello Sue. I know going to see my doctor or nurse practitioner, straight away they get their back up. It’s, oh! Have you read that, I expect it’s American, no! Don’t worry you are ok 🤬🤬🤬🤬 But! I am going well armed with this information. ( that’s if I can get an appointment) I totally understand and thank you for this it. 🇬🇧💕

[207jlodancer]

I went gluten free several years ago and it reduced my rls symptoms by about 75%. Then, last year i was diagnosed with an inherited kidney disease and was put on the Kidney Stone Diet" with cured my RLS in one day. This diet is low/no oxalate. Oxalates are in a ton of so-called health foods...which are not healthy for me. I am finally free of this hideous disease of RLS. It's a shame I had to suffer with it for 50 years. My condition is genetic, and it is a malabsorption problem. Good luck to all. (Try the Kidney Stone Diet!!!)

[Eryl]

Ths reason why cutting gluten is so effective is because gluten causes leaky gut so the body absorbs the sugar and starches quicker which causes a higher spike in blood sugar leading to more systemic inflammation which is most often the cause of RLS. Other causes of systemic inflammation are refined seed oils like canola oil, sunflower oil etc. I only use cold prsssed olive oil or coconut oil and I have eliminated my RLS without any drugs.

[test223232]

MamaBear44 Here is some info. that may be useful for you. My son (10 years) has similar RLS and breathing issues. We tried prescription to elevate the ferritin that seem to help him. We are off given the dosage is pretty high and I am bit concerned. Now the symptoms are back. Also, he had breathing issues and we had the adenoids operated. We are also on the journey to fix this root cause. Meanwhile, any notes that you can share from your recent experience?

[MamaBear44 in reply to test223232]

Oh my goodness - get his jaw checked by an orthodontist. I can’t stress enough how huge of an impact my son (now 4) has had from his upper jaw expander. Literally changed his life. They don’t know why today’s kids seem to have narrower and narrower upper jaws but it’s becoming an epidemic and our orthodontist said he treats younger and younger kids (like mine) for sleep issues solely now. Childhood sleep apnea is a growing problem and it stems from the tongue not being able to suction correctly to the roof of their mouth so it falls throughout the night and blocks their airway, stirring them awake. Don’t give up looking for answers!