Restless Legs Syndrome (RLS) Discussion Board

You wrote to Dr B at ''' .com''''
His address is - somno@verizon.net as indicated by viewsaskew.

A ferritin level of 31 would be considered ok for a non wed sufferer,
50 is getting a bit better, and strive for higher.

Ah! It's not .com, it's .net. If I am the one who typed .com at some point, forgive me! I hopefully will never get that wrong again... Shoot, it was me who typed it incorrectly - I just changed it upthread, too.

30 is low for someone with RLS/WED. It's considered normal for the general population. With RLS/WED, you want the ferritin to be at least 50 and preferably 100.

Views: Hmmm... I was sure you had typed it in correctly.

Generally adults with RLS/WED should have a ferritin level of 100 or more, but I don't know if that holds true for kids as well. You might consider a Vitamin D test as well: some of us have found that Vitamin D supplements help our symptoms.

Are there any pre-teen with RLS parents willing to talk to me? I have basic questions: how do you help your child fall asleep? what do you do when he/she is bothered by legs in school? are there any emotional issues your child has you can relate to RLS? etc.
thanks in advance,

I'm so sorry I was not on this thread earlier, I;ve been so insanely busy. The first thing I noticed in your story was the rapid onset and sudden worsening, which makes me think that maybe she is taking something that is aggravating her previously latent RLS. If you check the RLS.org site, under Publications, or just about any basic information on RLS/WED, it will list a number of common and not-so-common substances that worsen RLS.

The biggest culprit is anti-histamines. These hide in Tylenol PM and cough syrups and other medications, so check every ingredient of every medicine or substance she takes. (The newer anti-histamines don't have this effect, only the older ones). Other substances you don't have to worry about for the average 8 yr old are caffeine (watch out for pop & maybe chocolate), alcohol, and nicotine. Anti-depressants, anti-psychotic meds, and anti-nausea drugs are all known to cause RLS in susceptible people. Anything that blocks opioid receptors is the same.

Lots of people say ice cream makes it worse, so just for the heck of it, stop ice cream. I try to stick to scientifically proven things, but that's one anecdotal thing I will mention. If she has any gut pains, ask if she might have bowel problems - celiac, crohn's, other bowel diseases are all associated with a higher incidence of RLS/WED - get the bowel problem treated and the RLS might resolve.

As far as the crying goes, if she has RLS, it's no wonder. For two reasons: Ann's description of the mood changes when the RLS is active is perfect for me as well, the anxiety and general horribleness (she says it better) can easily lead to tears, and second reason is, the poor thing is tired. Sleep loss makes a person moody and cranky and emotional.

May all good things happen to you and your daughter; I really hope your research will turn up the clues you need to help her regain a decent life. Please keep us posted! There are other parents out there who may relie on your experiences some day.

Thanks for your reply. Unfortunately no, our daughter has not been taking any of the usual triggers of RLS, not even ice-cream. Celiac is also out -- she had a genetic test because her father does have celiac.
You use the phrase "when RLS is active". Can you explain that? So far, our experience is only of it being active. Does it become inactive? like disappears for a time?
In your experience, how long are these periods of activity?
thanks in advance. I really appreciate you taking the time.

Regarding RLS/WED and periods of activity. Usually the symptoms either start (activity) in the evening or when you go to bed, or else they get worse at this time. There is a certain circadian rhythm involved. Tho having said that I have it 24/7 and would find it difficult to pinpoint a time when I would be symptom free, however the mornings would likely be the easiest to cope with.

Others could only have WED symptoms (active) once or twice a week, or even much less,

In general 'active' is when there are symptoms.
We are all so different in our symptoms and how they feel to us and in what works for us.

I am so sorry that your daughter is suffering from this.

My wed is active all the time but i do have times when i think of it as being "quieter", i feel some of the symptoms as being like noise in my limbs or electricity like sensation. My symptoms are bad usually about 2 times a day--(assuming no added stresses or sickness etc.), the rest of the time it's more like waves of sensation culminating in the up or down cycle.
Don't know if this helps but if not i can try to clarify.
let us know how things go, sorry to hear about your daughter. How old is she?
good luck, if there is anything else...

Are you all on a GF diet or does she eat gluten rarely? If she is, she could test negative. And, as I understand it, the blood test is not 100%. Not sure about the genetic marker test.

For what it's worth, as I understand it gluten sensitivity can cause myriad problems, but there is no test for it. They're not sure if this is a precursor to celiac or if it's a separate disorder. I just read an article by Dr Fasano about it - maybe two months ago? I deleted the article but my husband may have kept it - he's celiac. For what it's worth, our nephew has had odd problems for years. His mom, too. They both test negative. But, they went gluten free about 2 years ago and as long as they are careful, the symptoms all stop. They get recurrent ear infections and my nephew has socializing and communication difficulties that go away when not eating gluten! Who'd think that would be related?

And, some of the hardest to identify celiac symptoms are those that are neurological. My husband had odd tics and muscle issues for several years before he was diagnosed.

Not saying she's celiac or gluten sensitive, but that when things like this start with a celiac in the family, it's a definite possibility.

Per the inactivity, the others have explained it well. The sensations that make me need to move are more or less intense throughout the day. The least intense, as long as I'm active, is 6 AM to noon. Unless I sat and read a book, I'd not have symptoms. From noon to 7 PM, I get symptoms off and on, but not usually bad. A quick stretch and walk downstairs and back up to my office and I'm usually OK. After 6-7 PM, I'm medicated. Without it, I'd be nutty with the sensations and by midnight I'd want to scream.

You're probably doing this already, but let your daughter know that you're talking to a group of other people who have the same problem. Maybe read her some of the descriptions of WED that you find here and see if she relates to any of them. It might help her if she has the words to describe what she's feeling. And just knowing there's a name for it can help, and knowing she's not alone. I realize a bunch of grown-ups might not be the best company for an 8-yr old, but we're experiencing the same things... it might help her to know that, or to type out a message of her own.

for this new diagnosis-child posts, there are two different people with two different girls correct?? One who made the original question and now a second?
just trying to not leave any stone UN-turned if there are two-for the second family.

rthom wrote:for this new diagnosis-child posts, there are two different people with two different girls correct?? One who made the original question and now a second?
just trying to not leave any stone UN-turned if there are two-for the second family.

No, same person - there was a user name update. Same person, same child.

yes, the same person. thanks to all who responded. It is hard for someone who does not have WED to understand what is going on. I appreciate it very much.

Just the other day the director of the RLS Foundation asked me if we ever had parents that participated on the Discussion board. A parent with an 11 year old was hoping for some assistance. I encouraged the director to ask the parent to join us, but do not know if he or she will.