Hello all, my little daughter has RLS. We had her iron tested and they have says she is deficient. I am wondering if anyone has a good specialist they would recommend for me to see? Ideally a holistic person to help me with dosage and co-factor supplementation?
One specialist who is a top expert in the field told me she needs to take 57.6 mg of iron per day. But I think that’s too much for a little girl weighing 12 kilos.
Any guidance would be gratefully received.
It is recommended in the Mayo Clinic Updated Algorithm on RLS that" ferrous sulfate 3 to 5 mg/kg in either tablet or liquid form should be administered once daily before breakfast if the serum ferritin concentration is below 50 μg/L." Ferrous bisglycinate does not cause constipation but it is harder to figure out the correct amount. Generally speaking 25 mg of ferrous bisglycinate = 325mg of ferrous sulfate. I assume you had her ferritin tested. For children you only need to increase ferritin above 50. 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 at Https://mayoclinicproceedings.org/a...
thanks Sue, all the doctors so far have been completely useless. Her Ferritin is 6.8 which is quite low right?
Yes - very low.
You could check with The Iron Disorders Institute , to ascertain correct increase of iron in a child.
do you know of any doctors / experts who would give personalised advice?
No, unfortunately.
I’m going to see dr buchfuhrer who is quite the expert in the field and has something to do with RLS foundation. I’ll pass on anything useful!
Yes- he is a world expert on RlS, and has participated in a number of research projects.
Hope he can help.
I'm so sorry yourlittle one is suffering. I pray that the iron will alleviate her symptoms.Good luck.x
I would think it is most definitely an iron deficiency issue. I had "growing pains" as a child and was treated for iron deficiency anemia. I remember little about it, and apparently the iron supplements worked. RLS appeared again in my 60s. The growth demands of infants and children put a lot of stress on iron in the body. There is also quite a bit of iron in breakfast cereals - as much as 10mg/serving from what I see. It might just be enough to "put her over the top" with available iron.
thanks so much for the tip. And for the hope that iron will relieve it!
YesIrondeficiencydoescauseRLSihadlowirinandsufferedterribly
and was it relieved as your iron levels improved?
The medical community is generally unaware of the benefit of a low oxalate diet for treatment of RLS. In 2015, after 5 years of closely observing my body’s reactions to various foods, I began posting on the rls.org discussion board for “Non-prescription medicines, supplements and diet” that I could switch my RLS discomforts “off and on” by adjusting the amount of oxalate in my diet. I was eager to find out if my approach could help other people. I had no significant responses for over a year, but I kept posting. A few people asked questions but only one contributed his results during the first three years of my crusade. It took many years, but eventually I was able to develop a group of participants who would consistently exercise the necessary discipline to produce the same results. These are quotes from the discussion board, mostly as replies to my posts:
5/8/2016, tommy108 wrote:
In summary, I am 100% certain the disappearance of my symptoms was a result of a low oxalate diet.
12/21/2019, wilabozo wrote:
I’ve been on a low oxalate diet for about 3 weeks, had ups and downs, but now starting to feel really good, no sign of RLS for 3 days, and I’m off all medication.
2/4/2020, wilabozo wrote to me in a private email:
I’ve had the most amazing 2 nights RLS free. I could feel a deep relaxation in my legs that I haven’t had before. Feels like they are healing. If someone had said to me three months ago, you can have a few nights RLS free/drug free by just following a diet, I would never have believed them. Now 2 months into the diet I have achieved what I thought wasn’t possible. I’m actually looking forward to going to bed tonight!
6/26/2020, XenMan wrote:
Please stick to this as most people don’t try because they claim diet doesn’t seem to impact them, or they don’t see any quick improvements and give up.
5/24/2021, Deb212 wrote:
Several years ago I started weaning off RLS meds as I was experiencing augmentation. I’ve been medication free for 15 months. I was afraid I would never sleep again and then I found this post.
6/22/2021, Einszwei wrote:
I’m still on the low oxalate diet and it’s still working great for me. I have almost no symptoms and can sleep through most nights.
8/6/2021, Deb212 wrote:
One thing that really helped was Jim’s information about how the offending food shows up 24 hours later. I was always looking at a closer correlation between eating something and symptoms but have seen it is 24 hours or the next night almost always. Please know I appreciate all your information and that you are sharing your ideas.
4/17/2022, Deb212 started her own post to encourage people to try a low oxalate diet. She included the following:
Today I look back on one year ago and my desire to end suffering from RLS. I really didn’t expect a happy ending. Thanks to “notnowdad” and his excellent information on oxalates and their impact on RLS, I have a life that is worth living!!!
8/23/2022, Einszwei wrote:
I have the utmost admiration and respect for your continued research and your documentation of everything that is helping you with your rls symptoms. Thank you for sharing your experience. I have been on a low oxalate diet for close to 2 years now and my symptoms have continued to subside.
Over the past seven years my support for my fellow RLS sufferers included three key new insights that helped to account for why it can be damnably difficult to achieve consistent relief from RLS by using a low oxalate diet.
1) Because of my sensitivity, I could precisely correlate my intermittent RLS discomforts with some vegetables (e.g., fresh artichokes) that are reputed to be low oxalate. After much digging on the internet I found on the website of a food storage warehouse company the information that many fruits and vegetables are typically sprayed pre- and post-harvest with an oxalic solution to “preserve freshness and nutrients”. Organic fruits and vegetables are typically not so sprayed.
2) When I switched my daily magnesium supplement from magnesium citrate to magnesium glycinate I had return of RLS discomforts. This led to my understanding that over production of oxalic acid in my liver is stimulated by glycine supplements and that endogenous production of oxalic acid can cause me to have RLS discomforts.
3) Over time I realized gelatinous, meat based soups and stews could also give me RLS discomforts. I attribute this to the glycine in gelatin. Most websites that give guidance on low oxalate diets state that meat and meat products are not a problem. Some of those websites are now mentioning that scientists have learned that eating gelatin raises urinary oxalate.
In recent years I have moved on to the question of why some of us lose our ability to tolerate normal amounts of oxalate. Briefly, fluoride damages the lining of the small intestine and that interferes with the absorption of fats and reabsorption of bile salts which are used in the absorption of fats. This causes the bile salts to enter the colon where they damage the mucosa. The bile salt damaged colon absorbs oxalate that would normally be discharged in the feces. The common refined, bleached and deodorized cooking made from seeds (corn, soy, canola, etc.) are difficult to absorb under the best circumstances and using them exacerbates the problem. These oils in processed food factories and fast food restaurants are typically made more toxic through too many filtration and re-use cycles.
My new program consists of avoiding ingesting fluoride as much as possible while also avoiding the common RBD cooking oils. Fluoride avoidance entails filtering my fluoridated municipal water, eating “organic” to avoid fluoride rich pesticide residues, not using any non-stick cookware that isn’t PFOA and PTFE free, not eating canned goods that may have fluoride in the can lining, not drinking commercially prepared beverages which may have been made with fluoride rich water, and not drinking wine which may have pesticide residue. Fortunately, I don’t use any of the popular medicines that contain fluoride.
I have been on this program for over a year and I seem to have recovered my ability to tolerate oxalate and not suffer RLS. I am now recruiting other sufferers to see if they can duplicate my results. Scientists in India have verified that children living in areas with high fluoride content in the water have higher rates of anemia due to the damage to the gut lining. I am fairly certain fluoride also directly impairs liver function and causes excessive endogenous production of oxalic acid (hyperoxaluria). I wish you and your child all the best.
I think the first priority is to get your daughters iron levels up, especially if the RLS us causing distress/sleep disturbance. It doesn't really matter too much how this is achieved. Once this has been done done you can take your time investigating the cause of low iron, especially if it's recurring.
To my understanding, RLS specialists and integrative/holistic doctors are two very different beasts.
I will! Thank you!!
Hi Hello, iron deficiency in toddlers and infants is not a rare thing, or even RLS. As a matter of fact, there’s a shelf of supplements at the drug store with just children’s iron and supplements. My favorite form of iron - because it’s so bioavailable - is ferrous bisglycinate, and I found a children’s formula with this form: maryruthorganics.com/produc...
I recommend giving the iron to your child about an hour before bedtime, on the outside chance it has an immediate effect, as it does with me and several others on here. Also, I noticed that each serving is 50% of the recommended daily allowance. Rather than giving it to her twice a day, I would give both doses before bedtime. You should then be able to see, that very first night, if she is thrashing about trying to get comfortable, or not???
As someone stated above, I too feel certain that once her iron levels are no longer below the normal range, the RLS will go. If it were my child, I would get the best child’s iron I could find at the drug store…TODAY. It’s going to take time to get any internet iron and will also take time to get an appointment with a Holistic Practitioner. In the meantime, your daughter is suffering. Besides, it appears that her doctor is spot on as to the amount of iron. The link I sent you is somewhat deceptive as to milligrams because it’s so bioavailable. This link will give you a better idea: hargravesotc.com/products/f...
As you can see from the back of the box, 37.5mg is 68% of the daily value for infants and 107% for children 1 to 3 years of age.
Clearly, infants need a higher dose of iron. Who knew? So your daughter’s doctor has prescribed exactly 100% of the daily value for an infant. Even though your daughter is no longer an infant she really needs that little extra boost of iron because her numbers are so low.
thanks so much for the advice. I’ve heard great things about that supplement. I’ve been supplementing 7mg for months, but yes I need to quickly up the dose. It makes me so happy to see another person who thinks that fixing the iron issue will resolve the problem. Thank u
This always confuses me, but if you look at the front of the box (second link above) you will see it says “1ml = 75mg of ferrous sulfate = 15mg of iron.” The recommended dose is 1/2 ml which is 7.5mg of iron and is 100% of daily for children ages 1 to 3. The first link also shows that 7mg is 100%. So you have been doing the right thing and giving the right amount. So you should NOT give your daughter 4ml in an effort to give your daughter closer to what the doc recommended. That would be like 800% of the recommended amount. Your daughter’s doctor was talking about that first number and with 7mg of elemental iron you are giving her what he recommended, essentially
What time of day are you giving the iron to your daughter and what type of iron is it? Anyways, I would try to give it to your daughter about an hour before bed on a somewhat empty stomach. If it doesn’t obliterate her RLS that night then I would say you can give it to her whenever convenient.
Have her symptoms improved at all with the iron?
For your reference: healthunlocked.com/rlsuk/po...
Just so you don’t think I’m crazy I provided you with that post. I’m not a big fan of ferrous fumarate but it works for Sher and I believe is covered by her insurance.
You could probably give your daughter 11mg of the elemental iron and that would actually be closer to what her doctor recommended if my math is correct
I am so sorry your little one is suffering, its bad enough for adults to come to terms with and manage, my heart goes out to you all and hope you find a solution soon 🙏
it is not easy raising your iron level so the amount should be ok for a short time and get her tested. I take iron everyday and mine is still low.
Being low on iron does not mean for sure she has RLS
Gapabentin for Rls? Any bad side effects?
Itching with RLS
rls in other parts of body????
arguing GP's - RLS-iron
PLMD and RLS Update
