Autism and RLS

[AddSchool]

I work with autistic young people. One young man shows all the symptoms of RLS which appears sensory and autistic in nature but wondering if anyone knows of any links between autism and RLS and more importantly how to support this young man who is non verbal. Having read about the dopamine link, wondering if this explains his cycles of being content and happy for a period of time then low mood and needing to hit his thighs -walks in the park support him enormously - I found this forum whilst investigating reasons for his behaviours.

[Joolsg]

autism.org/restless-legs-sy....

Yes, there is a link, and there is a solution. Most people respond to iron treatment.

So get full panel fasting blood tests, which will be difficult I know.

Raising serum ferritin above 100, preferably 200 will probably settle the issue.

Keep a diary to see if the behaviour of leg slapping is more pronounced at rest, in the late afternoon and evenings and whether sleep is affected.

[AddSchool in reply to Joolsg]

Thank you. Have suggested to mum increased iron as he is a very fussy eater and has a limited range of foods.

[SueJohnson]

Certainly some autistic people also have 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.

If he meets this criteria when he sees his doctor, whoever takes him should ask for a full iron panel. He should stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. He should have his test in the morning before 9 am if possible. When he gets the results, whoever takes him should ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his ferritin to be over 100 as improving it to that helps 60% of people with RLS and his transferrin saturation to be between 20 and 45. If his ferritin is less than 100 or his transferrin saturation is not between 20 and 45 post back here and we can give him some advice. Above all whoever takes him shouldn't let his doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels he needs it. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead whoever takes him should ask him 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 to be fully effective. After that it should increased it by 100 mg (25 mg pregabalin) every couple of days until he finds the dose that works for him. He should take it 1 to 2 hours before bedtime. If he needs more than 600 mg, he should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, he should take the extra 6 hours before bedtime. (He doesn't need to split the doses on pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. It may be difficult to know what side effects he may experience since he is non verbal. 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 he takes magnesium he shouldn't take it within 3 hours of taking gabapentin (OK for pregabalin) as it will interfere with the absorption of gabapentin and he shouldn'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 wants to know including about its treatment and refer his doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, 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, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, listening to music, and yoga. Keep a food diary to see if any food make his RLS worse

Many medicines and OTC supplements can make RLS worse. If he is 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.

[AddSchool in reply to SueJohnson]

Thanks - Its not that I think he necessarily has it and if it needs to be ruled out - just these strategies can do no harm but may help .

[SueJohnson in reply to AddSchool]

The way it is diagnosed is just whether he meets the criteria above. There are no tests for it.

[RCHD]

There’s actually a lot of info on Pub med, with science articles that support that children with Autism have RLS. Here’s one

Rethinking bedtime resistance in children with autism: is restless legs syndrome to blame?

pubmed.ncbi.nlm.nih.gov/328...

[notnowdad]

In her book Deep Nutrition, Catherine Shanahan M.D. suggests a connection between autism and the consumption of refined, bleached and deodorized cooking oils made from seeds. I was struck by the following apparent reference to RLS presented on page 196 of her book: When asked why autistic children perform repetitive behaviors, Carly, a young woman affected by autism who cannot speak but is eloquent on a computer keyboard, explains, “You don’t know what it feels like to be me. When you can’t sit still because your legs feel like they’re on fire. It’s a way for us to drown out all sensory input that overloads us all at once. We create output to block input.” (389)

My personal conquest over RLS started with a realization that I could switch my RLS “on and off” by following a Low Oxalate Diet (LOD). Oxalic acid is one of the most powerful iron binding chemicals there is. Our livers produce it as a waste product. When we overproduce it we manifest RLS. Following a LOD has helped many people reduce their RLS discomforts. A prominent scientist named Susan Owens has shown that limiting dietary oxalate can improve negative “autistic behaviors”. This is probably due in part to diminishing RLS discomforts in that population. I have shared my success over RLS on the rls.org discussion board for “Non-prescription medicines, supplements and diet”. My primary post there has had over 63,000 views.

I am now taking steps to educate the medical community about the success I and many others have achieved. This is a summary of my progress:

1) Many people have achieved relief from Restless Legs Syndrome (RLS) discomforts by following a low oxalate diet (LOD).

2) Achieving relief from RLS discomforts using a LOD can be difficult because many, and perhaps most, “non-organic” fruits and vegetables in grocery stores have been sprayed with oxalic acid solution to “preserve freshness and nutrients” during warehouse storage. Organic fruits and vegetables are not so sprayed.

3) Achieving relief from RLS discomforts using a LOD can be difficult because glycine-rich, gelatinous, meat based soups and stews can stimulate the liver to produce excess oxalic acid. This finding contradicts accepted guidance for LODs stating that meats and meat products can be tolerated.

4) RLS discomforts are probably caused by poor iron distribution in the body resulting from oxalate replacing carbonate as the agent in the binding of iron to transferrin. When oxalate replaces carbonate as the binding agent the iron becomes “locked up” and distribution is impaired.

5) Over exposure to fluoride and toxic fluorocarbons may be the root cause of RLS. First, fluoride damages the villi of the small intestine which leads to impaired absorption of dietary iron and fats. Second, fluoride stimulates hepcidin expression which also impairs iron absorption. Lastly, fluoride impairs liver function and augments excess production of oxalic acid causing a low grade hyperoxaluria. Liver stress and consequent malfunctioning may be exacerbated by “iron overload” traceable to sodium fluoride typically added to public water supplies.

6) Refined, bleached and deodorized (RBD) cooking oils made from seeds (corn, soy, canola, etc.) are, for some people, difficult to absorb in the small intestine. Poor absorption of fats in the small intestine leads to the inappropriate presence of bile salts in the colon. Bile salts damage the colonic mucosa which allows inappropriate absorption of dietary oxalates.

7) My personal experience suggests that diligent, simultaneous avoidance of dietary fluoride and RBD seed oils may lead to a recovery of the ability to tolerate normal amounts of dietary oxalate without reoccurrence of RLS discomforts. Avoiding dietary fluoride includes avoiding the especially toxic fluorocarbons which transfer from most “non-stick” cookware into the cooked food.

I have been using coconut oil in lieu of RBD seed oils because it is the most readily absorbed cooking fat. Many websites which give advice to people who have had weight loss surgery suggest coconut oil for the greater intestinal absorbability of its medium chain triglyceride fat. Dr. Richard E. Frye in “Mitochondrial Dysfunction and Its Treatment” in Cutting Edge Therapies for Austism 2011-2012, edited by Ken Siri and Tony Lyons, says, “Some patients respond to medium chain triglyceride oil supplementation since these fats do not require carnitine to be transported into the mitochondria.” And a final thought: Many people with autism are avoiding dairy. Because dieary calcium helps to prevent absorption of dietary oxalate, a low calcium diet may exacerbate oxalate absorption issues and increase RLS.

[SueJohnson in reply to notnowdad]

Very interesting.