He has been unable to maintain his ferritin level to bring relief. He continues to have daytime sleepiness at school that affects his ability to stay awake in class. Especially when the room is dark while the teacher is using the white board. I don't like the recent findings that taking iron or other 'metals' can cause long term harm to the brain and cause Alzheimer's. I don't like pharmacology. I am not seeing a lot of natural therapies that are working for people on this forum, and am scared my son will wind up disabled, such as what I am reading on this forum. Can anyone give me hope for his future? Any help would be most appreciated. Thank you.
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momofrlssufferer
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That must be awfull for you both, so sorry to see this, and i hpe you find some help for him soon, my heart goes out to any child that suffer's from this illness x
Thank you, Elisse. I will read it with great interest.
Im wondering how they would treat him, as a child that age, surely cant be taking the drugs we take, and not even sure i would like a child of mine to take them x
He had a sleep study done, finally, at my insistence. It showed limb movement. A blood test for his ferritin level followed and it was 7, and should have been over 50. We treated him for 10 months with iron and vitamin c and got it to 75. The doctor told us to stop using it, and the body would kick in and maintain the proper level. It did not. His ferritin level plummeted. So I have just been keeping him on it. But now I am reading that taking metals, like iron, long term can cause Alzheimers. I don't know what to do! I am reading the document Elisse sent me, and am just getting to the part about serum ferritin. That he needs to have it tested in his bone marrow. That will go over well. But really, his iron level is SO HIGH now, and still his serum ferritin is low, taken only by blood test. The other night he got a migraine for the first time. Scared me, because I am now worried about the iron. so he slept with me, and at one point in the night I felt is legs jerking, so I now know he still suffers. I suspected so because he still has daytime sleepiness.
Yes, he felt rested when his ferritin level was 75. The doctor told us to stop taking the iron, and I asked, what will make it stay at that level. And he answered 'we hope the body will begin to maintain it on its own'. My sons alternative medicine doctor suggested perhaps he had a nutrient absorbtion problem. This made sense. My son limited his foods, ate mostly cheese, and junk like chicken nuggets. We have since changed a lot in our diet. No soda, no high fructose corn syrup, no McDonald's, I try to limit processed foods, doesn't always work, but we are better than we were. He does not eat vegetables, and eats some fruit. He has a texture issue. I also know his body has difficulty detoxifying from toxins like pesticides. This is based on some tests the alternative doctor did. That doctor is very expensive. Not covered by insurance. So we have made some changes. Alternative doctor suggested eliminating dairy and gluten to heal the stomach, to see if he had an allergy or sensitivity. That is very hard to do with a preteen/now teen.
Hi there mom sorry to hear about your son's problems but do read the comment on this forum by the lady and her sister who stopped consuming any dairy products and that was the end of their RLS problems. I'm not saying this is the cure all but it may help. Good luck🙏
I think i found the article that you might have read about the iron and Alzheimers, if i read it right, that could only happen if you take too much iron, as long as you keep the ferritin level at the right number, 50-70 then i would say it should be fine. But i am not a doctor. Talk to your doctor if you are worried. Too much iron is bad for anyone.
His iron level per hemoglobin test is very high. That is the part that worries me. Yet I am unable to get his serum ferritin level back up over 50. He felt much relief when I was initially able to get his level to 70. He have not seen that level since that initial time. Part of the problem is I stopped going to the pediatric sleep specialist when he pretty much mocked me for alternative therapies that I found for my son for other issues he was having. Fortunately for my son, the alternative therapies worked where 'traditional medicine' was causing many many problems. I do not want to go to a physician who mocks alternative or natural therapy.
Thats one of the problem's, with RLS, iron just does not seem to help all of us, if only it was that simple, one thing i would warn you about is the people on the internet that say they have the cure, as yet there isnt one, and those people just want to take your money, so i would say steer clear of them
Hi, so sorry to hear about your son. He' not got an easy journey ahead with this condi
Hello momofrlssufferer, welcome to the rls forum.. Please stay with us.
Continue to talk to this group and read as much as you can over here.
HealthUnlocked has another group on here..it's called Pernicious Anemia.
They mostly talk about vitamin B12 deficiencies but they do also talk about
other issues with the blood.. I want you to look into the information over
there and ask some questions about this...there is a smart and very helpful
person - Hampster1.. she will help you find information all about the blood
and balancing blood vitamins, minerals.. she is excellent... She can help
with almost anything blood while we can help you out over here in rls..
You can expect to gain a lot of knowledge between our two groups.
Please ask away questions of any kind... no question is off limits on both
of our groups.
You did come to the right place.. but since the blood is your top concern today,
lets start over there. and then come on back.. or just stay right on here
and let me gather information from the PA community for you... let me know
whichever way you want to go. I am and so is everyone else willing to help
you to make you, your son more comfortable.. Sound okay to you?
I asked my friend in the PA group to give me some information. From one mother
to another mother, I know how much we worry about our children.. I hope that this
is a start for some ideas.. she's not a doctor but she does know a lot about these
things so take what you like from her as I am coping the information links and all
that she passed onto me...here it is.....
Today at 4:32 AMhampster1
Hi Karen,
I'll definitely look out for her post, hope she makes it over here. It is difficult to comment without more detail, but with kids there is really only one place to start and that is testing for Coeliac Disease. This can lead to all sorts of deficiencies and problems if left untreated, but can have next to no symptoms. You can also test negative and still have problems with gluten. I believe that I fall into this camp myself as I feel much better on a gluten free diet. This is becoming more widely accepted and is called Non-Coeliac Gluten Sensitivity:
Low ferritin but high iron is unusual, I'm not sure about that. Have a look at this link:
labtestsonline.org/understa...
But I've read that iron anaemia is associated with RLS, so can he be displaying symptoms of iron anaemia despite high serum iron? I think the only thing she can do is take him to a haematologist, and make sure they run a full iron panel of tests (serum iron, TIBC, UIBC, % TIBC saturation, ferritin).
The best way to test for B12 deficiency in kids is the urinary MMA test. It's more accurate than the serum MMA test and obviously much less invasive. I'm not sure how available it is however, she might have to do some digging to find out where she can get the test.
Thank you, Yikes! you have done so much research! I really appreciate it. You have no idea. I don't want for my son to get to the point where only drugs will help him. So far, for other things, supplements like vitamins, minerals and amino acides have helped him so much. I just need this last piece to help his RLS, and I think I am on the right track with everyone being so helpful! Thanks again.
Hi, Mum of RLS sufferer. Your account chimes a lot with my son. Where are you now on this? Is your son Asperger's or ADHD or ADD? I think between us we probably have overlapping issues in our children and we may be able to help each other. I hope so.
Since my son was diagnosed, and after the initial sleep study was done that showed leg movement interrupting deep sleep, and then he had the blood test for his ferritin level, we all began to suspect it. I had my blood work done this summer. My ferritin level was 30. My sons was 7. Now my older son is having his tested. So mine is not severe, my son does not complain of pain or movement during the day. He did not even know his legs were moving at night. Only thing we noticed were the covers were all over the place in the morning. Even on the floor. This is why I think it is food and or gut related, preventing absorbtion of nutritents. I did not come to that conclusion on my own however. An alternative doctor pointed it out. My son was having other issues.
It sounds as if your son has PLMD, if he he doing all that moving and kicking in the night.
• in reply to
Thanks Eliisse.. I was looking for info on PLMD, my son's fiance says that he kicks
and his body moves like he is having a seizure. My son says that he's always locked his feet since 8th grade and he shakes his legs until he falls asleep...he says that he does not have rls.. He started up a nutrition plan that I helped his wife with (she asked me to) so hopefully things will calm down. He's getting a test done for vitamin and mineral deficiencies.
He will not take pills or shots.. so we have to do our magic with foods to fulfill those nutritional gaps.. to be honest..he's going to supplement with herbalife. because he needs the extra protein and he dislikes the best veggies for his body.. I kick too but not since I
have been on pramipexole. Now my legs are like they are on cocaine.. I dislike my legs.
Hello Momofrishsufferer,, My son contracted RLS at the age of 15 but luckily he did not progress in the manner that I did so hopefuly your son may follow that pattern.
My neice along with 10 other family members also has RLS and when her son reached the age of 7 he also contracted RLS.
My neice lives in Holland and for herself she takes Magnesium although I do not know the dosage. She also gives her son a very, very low dosage of magnesium and it works well for him. Once again I do not know the doasge.
Apparantly there are different degrease of Magnesium as when she buys it in Holland where she lives the Magnesium does not work as well as when she buys it is Belgium.
Once again we are talking about giving a child medication which must be backed up by a doctor.
It is an avenue to at least follow and see where the road takes you but please seek your doctors advice.
I do hope this may be of some help to you or maybe others.
Thank you Raphael, medical doctors here is the US have gotten so very far away from nutrition. It is all about pharmaceuticals here. One doctor told me the supplements my son was on were not approved by the FDA. Well, he couldn't know how happy that makes me feel! The FDA would like for all of us to be on drugs! I want to help my son get well, not mask symptoms. Symptoms are there for a reason! To let us know there is something wrong! Perhaps the Mg she gets in one country is one form and the one in the other country another form. Thanks so much for sharing.
hiya so sorry to hear about your son lots of good advice on forum re blood tests take this back to gp they dont know everything i also take magnesium although not as effective since menopause but took magnesium ok for years which did help discuss with alternative practitioner maybe he has more info.thinking about you both keep us updated
My son's consultant says that there is no reliable research showing magnesium levels have any impact on RLS. Indeed, his results showed magnesium levels were fine - but still very severe RLS.
When my son was 13 he developed Rls as a sufferer I was beside myself with worry,he had a low iron count and was given iron tablets which he could not tolerate,so I went to our local health shop and bought a liquid iron called Spatone, he is 21yrs old now and still takes it but thankfully his ferritin and iron levels have remained stable and he has no RLS
bvlgari, thank you so much for posting this! Something just struck me. After the initial time we got his ferritin level above 70, I changed the form of iron because the form he was taking was so harsh on his stomach. I switched to ferrous fumarate from ferrous sulfate. I wonder if perhaps ferrous fumarate is not as easily absorbed by my son. I know there are three forms of iron supplement. The two I mentioned above and falso ferrous glyconate.
Now the one you mentioned Spatone, aka pur-Absorb in the US, is ferrous sulfate, but it says the delivery is easier on the stomach, liquid rather than pill and easily absorbed. You have given me hope! Thank you. Back to research!
Just wanted to give a quick update as you were all so kind to respond to me. I picked up some Spatone Pur-Absorb Iron supplement. Someone on this forum recommended it. My son has been staying with a friend for the last few weeks, but he reports that before his friend said he was moaning a lot in his sleep, and my son said his blankets were all over the place in the morning. After just a two weeks he says his blankets are staying put, and the moaning has stopped. He feels a bit more rested. So we may be on our way towards higher ferritin levels. Thanks to everyone who responded! May you all find peace and sweet dreams.
There are many parallels between your son and mine. Both born to mothers who may have been low in iron in pregnancy. Restricted diets, loves cheese (and milk) doesn't eat veg, texture issues. Very low iron content - almost none - in meals. (Why on earth would a doctor think the body could regulate iron on its own if the diet was deficient in it?) You know high milk consumption reduces iron absorption I expect.
Mine almost certainly had the cord immediately clamped at birth which would make any iron deficiency problems worse. Was yours premature or Caesarean?
I have just been reading a very interesting study on rats which showed the baby rats born to iron deficient mothers had lower haem, lower sucrase, lactase and maltase than normal. Only one study, but it looked as though it might be a possibility that iron deficiency in mothers could link to gut issues in offspring. Lactase deficiencies, the inability to digest milk protein, are very high in autistic children - and rarely tested for. As you say, it is very hard to take a child off dairy when that is a main part of their diet.
As for the RLS , please visit my site (deleted as contravenes forum rules -Kaarina volunteer) for the natural cure I found that worked for me. Interesting though, my brother, who used to fall alseep in school all the time too, was diagnosed with a condition that makes you produce or retain too much iron ( I can't remember the name of it off hand). He is fine now, but that is something you may want to google for yourself or have your Doctor check out.
I see nothing about RLS specifically on your web site. I could speak to several sections on your site. BUT, I will stick with 2 things I saw that I want to address, kelene. First, Melatonin, in the context of RLS, we have found out, is NOT a good idea. Melatonin actually blocks the dopamine neuroreceptors in your brain. So a bad idea for RLS. For jet lag, yes, to take it for 7- 10 days is fine, if you do not have RLS. As far as Candida..........that theory needs a lot of discussion, which I do not have time for right now. But, i do know of several doctors who automatically diagnosed their patients with Candida, charged them for the tests, and then it was found out that the tests were NEVER run. Candida is an easy non answer. Scientifically, for that much Candida to build up is almost physically impossible. My nephew is severely autistic, and my sister has done all the anti-inflammation diets, the non dairy, etc, etc. There is not ONE answer for all of these "conditions" "syndromes" "diseases". RLS is actually listed as a neurological disease as of 3 yrs ago, and also it is neurological, can be inherited, which is Primary RLS. Since you do not suffer from RLS any more, would be interested in hearing YOUR story instead of being sent to your web site, which while reworded to fit your agenda, is the same stuff I have read on a million web sites that cannot back up the theory. Candida "overgrowth", as I said, is the easy NON answer and is almost impossible, but is a pseudo-diagnosis that is used for nefarious purposes. I have proof of all of that, but do not have time right now. But the answer to every disease or syndrome or condition is not inflammation and/or candida. RLS can be inherited, the genes were discovered in 2004 and 2007, and that is Primary RLS and is genetic. Secondary RLS is caused by many underlying conditions, the most common being taking the wrong kinds of meds for other conditions, like SSRI antidepressants, tricyclic anti-d's, over the counter sleep meds, OTC cold meds and allergy meds to name a few. Also, things like end stage kidney disease can cause secondary RLS, especially dialysis patients.
Thanks for responding. I do not have an "agenda" as I am not selling anything, it is just way too much to talk about in a blog setting so "my story" is posted on the website for convenience so I don't have to rewrite it and also so anyone can read it. I simply wish someone had given me this information a long time ago. I would never be so brash as to assume these are answers for everyone as genetic factors I am certain play a role for some people. Dealing with RLS and Chronic Fatigue in a "Natural" way and now feeling REALLY good I cannot be silent as to what I have learned has worked for me. It would seem non-logical not to listen to what people who have cured themselves have to say. It was a definite trial and error, process of elimination for me so I think common sense says if it does not cost you anything and will not harm you it should be looked at. Being diligent about sleep hygiene, moderate exercise and the "right" diet for each person is something I think no one can argue against. Also, as I have found there seems to be no "one" answer and that is the point! Just focusing on diet would not have fixed my problem; simply reducing stress; or only concentrating on exercise never worked in and by itself. In fact, all of the Professionals I refer to in the site say to increase Omega 3 and reduce Omega 6 and it was not until I did that and eliminated "chicken" from my diet (as I apparently react adversely to it...and as my allergist said just because you react to something doesn't mean you are allergic) that I feel consistently well. If you have read all of this before, then I am sorry that I cannot provide anything new for you to try. However, I should say that only one brand and one kind of melatonin worked for me as they all contained dairy. I simply lucked out trying the right one first. After that, I found out the hard way that the other brands made my condition worse! Also, on the note of Candida, as I mentioned, if it was the only thing wrong I would have felt great years ago! As 70 to 80 percent of our immune system resides within our guts, it only makes sense to treat your bowels with the utmost of respect and help however you can. Anyway, the links on the site support the hypothesis that worked for me, and I am certain I am not the only one out there for whom it can help. Sincere good luck with your efforts, I COMPLETELY UNDERSTAND HOW FRUSTRATING IT CAN BE...speaking from experience.
You actually havent "cured" your self, you have treated your self with what ever you did. If you stopped what you are doing your RLS would be back. So, calling it a treatment would be better than saying you are cured. A cure is when a condition can never come back.
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