Useful info for PARENTS WITH CHILDREN

WED/RLS occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, WED/RLS in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.

Useful info for PARENTS WITH CHILDREN

Postby trevb » Wed Aug 24, 2005 3:53 pm

publications and papers on children and rls

http://www.rls.org/NetCommunity/Document.Doc?&id=9

http://www.mdvu.org/library/disease/rls/rls_mptc.html

http://www.medscape.com/viewarticle/509045_print

http://www.medscape.com/viewarticle/491438_10

http://www.projectsinknowledge.com/Init/N/1696/

http://www.doctorbob.com/2005k_01_14news03.html

http://brainblogger.com/2005/01/article ... ed-to.html

New! http://www.teletext.co.uk/entertainment/health/1/Van+Straten+on+restless+legs.aspx


general advice/info and ideas posted by members of the forum
http://www.restlesslegs.org/phpBB2/viewtopic.php?t=1124

http://health.groups.yahoo.com/group/ea ... essage/870

http://www.restlesslegs.org/phpBB2/view ... highlight=

pharmacuetical treatment extracts and papers

http://www.projectsinknowledge.com/Init/N/1696/

http://pediatrics.aappublications.org/c ... /111/1/e17

advice re ferritin levels in children-
"I heard from Dr. B and here is his response on my question (Cut and pasted from his e-mail response):
A ferritin level of 35 is the goal for children as determined by Dr. Dan Picchietti (who is one of the experts in pediatric RLS). However, as you child is very close to that goal, it is much less likely that raising the level will improve the RLS. When the initial ferritin level is much lower, the chances are better that treating it will result in improvement."

From We Move Organization: Pediatric Treatment Centers.
Look Up your state and see if you have a movement disorder Pediatric Center near you!


http://www.wemove.org/TCD/



not much info out there..... please add to this as more info becomes available
trev

[/b]
Last edited by trevb on Tue Nov 08, 2005 4:54 pm, edited 5 times in total.
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Postby trevb » Tue Aug 30, 2005 7:50 pm

http://www.sleepnet.com/rls3/messages/657.html

advice from mum with 6 yr old from sleepnet forum re: insisting on a sleep survey for children to demonstrate rls (sleep survey looks for periodic leg movements which can go towards diagnosis of rls)
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Postby moreta » Thu Dec 15, 2005 2:28 pm

Wow...that's a lot to take in.

When I was diagnosed a year ago, we realized I'd had RLS since childhood, and my doctor suggested that I watch my kids for signs of RLS.

I didn't realize just how strong that genetic link was, though, until reading some of the articles listed above (despite now suspecting my grandmother has and great-grandmother also had RLS). Now I'm seriously wondering if I should get my 5 year old sleep-tested....he's such an active sleeper, we've taken to leaving off the top sheet and just having him use a comforter so he's less likely to get tangled at night. He also has perpetual circles under the eyes, and is often moody - easily saddened or angered.

moreta
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Postby ViewsAskew » Thu Dec 22, 2005 9:08 pm

The genetic component is amazing. Because so many in my family have it, I am more amazed by the people who have no seemingly family history. The researchers do think that there are probably several genes at work, but it makes it harder to diagnose and find ways to help it the more ways there are to get it.

There was a new research study that came out earlier this week that was also interesting. I'm posting the link and the content (I hope no one objects, I know that I don't have their approval - but at least you know where I got it). I posted this earlier in the week on the Yahoo board.

http://www.websciences.org/cftemplate/N ... D=20048086

STUDY OBJECTIVE: To describe parent-reported and actigraphically
assessed sleep patterns and sleep disorders in stimulant-medication-
free children with attention-deficit/hyperactivity disorder (ADHD),
divided according to ADHD subtype. PARTICIPANTS: Seventy-one
stimulant-medication-free children with a clinical diagnosis of ADHD
(8 girls; mean 8.8 years (SD 2.6), range 3-15 years) recruited from
child psychiatry clinics. MEASUREMENTS: ADHD: ADHD Rating Scale DSM
IV- Home Version to subdivide children into those with predominantly
attention deficit, mainly hyperactivity, and those with both aspects
equally. Sleep: Parent-completed sleep diary, clinical history, and 5
nights of actigraphy. RESULTS: Parents reported a wide range of
frequently occurring sleep disturbances in their children. However,
the objective sleep patterns were not abnormal and did not differ
between the ADHD subtypes, and objective sleep patterns did not
predict ADHD severity. There was poor correspondence between parent
report and actigraphy. Careful clinical consideration of each case
suggested that sleep disorders may be widespread in this group of
children; only 8 of the 71 children had no discernable likely sleep
disorder. Symptoms of sleep-disordered breathing, sleeplessness and
reports of restless legs featured prominently. CONCLUSIONS: Parents
of children with ADHD may not be accurate reporters of their
children's sleep pattern and/or the sleep disturbances that come to
parents' attention are not best detected by actigraphy. Results
highlight the prominence of parent-reported sleep disturbance in
children with ADHD and the need for clinicians to routinely screen
for the presence of sleep disorders and assess detailed sleep
physiology where indicated.


WOW - only 8 of the 71 children did not have any discernable likely
sleep disorder!!! Too bad they didn't have any controls. But, this seems huge to me. I know 71 isn't a perfect sample size, but
it's a lot larger than some studies. Of course, all of these kids were targeted because of ADHS issues, but this highlight an important point - do they? This sort of mirrors some of the other research that shows ADHD and RLS are related. The current theory is that dopamine is mis-regulated in RLS patients, so this may also apply to these kids, as I think dopamine is also at issue. But I'm not well-read about ADHD so I'm sure someone else can correct me.

Sounds like regular screening could be very important for this
population. I have a lot of concerns about children taking medication, especially when we have no long term understanding of
what medication does. On the other hand, seems like a lot of this
population is really suffering. At least if they are diagnosed, parents have a reason for some of the behavior issues, and can look into trying to find ways to get them to sleep better.

Ann
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Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Postby ksxroads » Tue Apr 25, 2006 4:14 pm

http://www.medscape.com/viewarticle/509045

Restless Legs Syndrome Highlights From the Associated Professional Sleep Societies 19th Annual Meeting
Posted 08/15/2005


Childhood RLS
Early Manifestations of Restless Legs Syndrome in Childhood

Picchietti D, Stevens H
Oral Abstract 0216

These investigators reviewed the records of 199 children presenting for follow-up of sleep problems (excluding sleep-disordered breathing) to a pediatric neurology/sleep practice. They identified 18 children who did not meet diagnostic criteria for RLS at initial presentation, but did meet the criteria at follow-up. Of these, 16 had reported chronic sleep-onset problems and 8 sleep-maintenance problems at the time of the initial evaluation; 10 had a history of growing pains; 12 had a parent who was diagnosed with RLS; 11 of 17 experienced at least 5 periodic limb movements of sleep/hour; and 9 of 11 responded to dopaminergic medication. Comorbidities included attention-deficit/hyperactivity disorder (ADHD) (13), anxiety disorders (6), depression (4), and oppositional defiant disorder (4). Thus, in this population, clinical sleep disturbance preceded RLS diagnosis by an average of 11.6 years. The findings of this study support the 2002 National Institutes of Health (NIH) diagnostic criteria for RLS in children.

Pharmacological Management of Childhood Restless Legs Syndrome

Sayed M, Kotagal P, Foldvary N, Bae C
Poster Abstract 0245

This retrospective review examined records of 207 children who presented at The Cleveland Clinic Sleep Center, Cleveland, Ohio, from 2000 to 2003 for evaluation of sleep disorders. In all, 10 children (5%) were diagnosed with RLS, confirmed by a full-night in-lab polysomnography. The mean age was 9.1 years, with the age of onset from birth to 10 years and mean duration of complaints of 5 years. In all, 6 of the 10 children had comorbid ADHD; 3 had a family history of ADHD; and 4 had a family history of RLS. The children received gabapentin, clonidine, or ropinirole, and all experienced amelioration of symptoms of RLS.

Ropinirole in a Child With Attention-Deficit Hyperactivity Disorder and Restless Legs Syndrome

Konofal E, Arnulf I, Cortese S, Lecendreux M, Mouren M
Poster Abstract 0285

This report describes a 6-year-old boy with concurrent ADHD and RLS. Coadministration of methylphenidate and ropinirole was found safe and effective for symptoms of both RLS and ADHD in this young child. The presenters posit that the improvement of ADHD symptoms when awake may result directly from effects of ropinirole on the dopamine dysfunction associated with ADHD, or indirectly from improvements in nocturnal sleep.
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For Parents of Sick and Worn-Out Children

Postby ksxroads » Thu May 18, 2006 4:56 pm

http://home.bluecrab.org/~health/sickids.html

A website created by Frank Albrecht for parents of children with CFS, FMS, or various other fatiguing illnesses.

Brief bio: "I have a Ph.D. in a combination of psychology and history from Johns Hopkins. I also did a post-doctoral fellowship in social psychology at Johns Hopkins and am a member of the American Psychological Association. I am licensed in Maryland as a Licensed Clinical Professional Counselor and certified nationally as a Certified Clinical Mental Health Counselor. In the past I have been high school teacher and a college professor, as well as a counselor."

He is the parent of a child with CFS and other illness.

While its primary focus does not include RLS, I thought it might be helpful for parents with children suffering from RLS.

http://home.bluecrab.org/~health/sickids.html

Hazel
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Personal childhood experience

Postby bugdog » Sun Nov 12, 2006 12:31 am

One of my earliest memories is actually of me crying (squalling, I'm told) and waking my Dad up. My legs were driving me crazy and I specifically told him it felt like I had scorpions on them :shock: (active imagination, heh heh). We checked to make sure there were no bugs (of course there weren't any bugs) and he said it was just the hair moving on my legs against the pajamas. I wasn't in school yet, so I was probably 4 or so.

I know that I still had other bad nights with RLS as a small child, but nothing as vivid as that one. I can clearly recall ransacking my Grandmother's house trying to find anything I could put on my legs to make that feeling go away so I could sleep. I was house sitting for her, I guess I was 16 or so. I found Asorbine Jr and liberally applied it to both my legs. It didn't work, but it was my only option at the time. That was a miserable night if I ever had one. I never thought to mention it to my parents - I guess I just thought it was either A) normal or B) all in my head.

I didn't actually know what it was until I was in my late 20's and was surfing the net. I found the only site on the web at the time about RLS and I immediately told my husband, "Here's what we have!" (His didn't crop up until he was in his 20's - he has a history of Crohn's - diagnosed at age 9 -and secondary Fibromyalgia - diag @ 24 - and he hates RLS more than either of them). We call it the twitchies in our little world. He used to tease me that I gave it to him because he'd never had an RLS attack before he met me :roll: .

I talked to my parents and found out that my Dad's always "chased rabbits" (Mom's term) and that my Grandfather (Dad's Dad) had the same problem - which is the real reason my grandparents had two twin beds (shoved together) instead of a full king. The things you discover as you get older.

As a child, I was healthy and had no other medical problems - just occasional RLS. I'm not sure what this story is worth to anyone, but I thought a personal anecdote might be a good addition to this discussion.


~Kelly
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useful info for parents for children

Postby ctravel12 » Sun Nov 12, 2006 1:10 am

Hi Kelly. Welcome to the board. I see you posted twice before but did not see them. Anyways, so sorry that you and your husband have rls, but you found a good support group here. I know other members will post and give you any advise that you need. Just keeping asking questions and let us know how you two are doing. Have a good evening. BTW I enjoyed reading your story.
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Postby jan3213 » Tue Nov 14, 2006 3:59 pm

HI Kelly and welcome!

I'm really glad you posted your story. I think it will help so many people who look at this thread.

I'm so sorry you and your husband have RLS, but am so glad you found us. I look forward to reading more of your posts. I hope you decide to visit us again. This forum is wonderful--made up of wonderful people. We're like a family.

Take care.

Jan
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Postby becat » Tue May 15, 2007 1:39 am

There is a new Pediatric Treatment Center listing on The We Move Organization board.

It may be helpful to anyone with children living with movement disorders.

Here's the link and it's above in the top section too!


Pediatric Treatment Centers:

www.wemove.org homepage.

a direct link :

http://www.wemove.org/TCD/
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Postby ViewsAskew » Tue May 15, 2007 2:23 am

Hey, Lynne, did you post this above in Trev's post? I was trying to decide what was New and what was Old (so I could remove the New! in front of the Old posts, lol). I couldn't tell, but I didn't remember that from before. . .
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Postby becat » Tue May 15, 2007 5:00 am

I posted it in the sticky for kids, his Trevs post and another as well.

It's a new site, cool to have that resource.

Lynne
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Postby ViewsAskew » Sun Jan 06, 2008 6:59 am

Here is a study released from Mayo in late 2007. It shows the prevalence of RLS in children at 6 percent.

http://myrestlesslegsyndrome.com/childr ... deficiency

In case this link stops working, the text follows below:

Restless Legs Syndrome In Children Linked To Family History, Iron Deficiency
A Mayo Clinic study has for the first time established rates of restless legs syndrome in children, finding that almost 6 percent of children seen in Mayo’s sleep clinic have the disease. The study, published in this month’s issue of Annals of Neurology, also notes that the most common risk factors for the disease in kids are family history of restless legs syndrome and iron deficiency.

“Restless legs syndrome is underdiagnosed in kids,” says Suresh Kotagal, M.D., chair of Mayo Clinic pediatric neurology and a sleep specialist. “If you look at children with difficulty falling asleep, you’ll see a fair number have restless legs. Thus far, there have been sporadic case reports, but nobody has studied a larger group of children, looking at children with insomnia complaints as a whole to see how many had restless legs syndrome.”

Dr. Kotagal and his colleague Michael Silber, M.B.Ch.B., Mayo Clinic neurologist and sleep specialist, indicate that restless legs syndrome may account for some of the age-old notion of “growing pains.”

“It’s been known for decades that children have ‘growing pains,’” says Dr. Kotagal. “Studies by other investigators have now shown that growing pains in some children may actually be restless legs syndrome.”

Dr. Kotagal says that while infrequent “growing pains” may be immaterial, parents and children should be alert for a habitual pattern of discomfort in the limbs around bedtime.

“Occasional growing pains are nothing to worry about, but growing pains every night may be restless legs syndrome,” he says. “It’s like the fact that somebody might snore one or two days a month, but if it happens every night, it may be something that needs medical attention.”

The study examined the records of 538 children who had been seen in the pediatric sleep disorders program at Mayo Clinic between Jan. 2000 and March 2004. New, rigidly defined diagnostic criteria established by a consensus conference of the National Institutes of Health and the International Restless Legs Syndrome Foundation in 2003 allowed the Mayo Clinic researchers to classify their 32 patients as having probable restless legs in nine cases and definite restless legs syndrome in 23 cases. Those in the probable restless legs syndrome group were more likely to be younger. The most common symptoms were trouble getting to sleep or staying asleep, which affected 87.5 percent. One commonality in the restless legs syndrome patients was a low iron level in the blood (as measured by serum ferritin) seen in 83 percent of the patients, the explanation for which is unknown, according to Dr. Kotagal.

“With regard to the iron deficiency, we don’t know if it’s the diet or a genetic predisposition to low iron levels,” says Dr. Kotagal. Drs. Kotagal and Silber also found family history of restless legs syndrome in 23 out of 32 patients identified to have restless legs syndrome in the study, or 72 percent. The child’s mother was three times more likely to be the parent affected with restless legs syndrome.

“There seems to be a strong genetic component in restless legs syndrome,” says Dr. Kotagal. “Very often when taking the medical history with the child, the parents say they have a similar condition.”

An additional characteristic seen in 25 percent of the patients was inattentiveness.

The researchers note that the symptoms of restless legs occur most often in the evening or around bedtime. Symptoms include discomfort or needing to move the legs, which is alleviated by moving around.

“Children very often describe it as ‘creepy crawlies,’ as ‘ouchies’ or ‘owies,’” says Dr. Kotagal. “It feels like bugs crawling on the legs. One child described it as feeling like he was walking though snow. There is also an uncontrollable urge to move the legs.”

Dr. Kotagal believes that it is important to recognize and treat this condition, as it hampers a child’s lifestyle. “If affects the quality of life,” he says. “They wake up frequently in the night. They wake up tired. They may also be inattentive during the day.” The long-term outcome of childhood restless legs syndrome is not known, according to Dr. Kotagal, but it is treatable using medications that increase the levels of dopamine in the central nervous system. Dr. Kotagal notes that there is evidence that iron seems to be very important to the synthesis of dopamine in the body. He says that there is not yet sufficient evidence, however, that treatment with iron helps relieve restless legs syndrome in children.

Dr. Kotagal indicates that there may be connections between restless legs syndrome and attention deficit hyperactivity disorder. The treatments for both conditions address somewhat the same chemical imbalance, he notes.

“When we look at kids who have decreased attention span, over one-third of them will have sleep apnea or restless legs syndrome,” he says. “We can say that it goes to further affirm the fact that inattentiveness is multifactorial — due to depression, anxiety, stressors in the child’s life, obstruction of breathing passageways, sleep apnea or restless legs. We need to look at all of these possibilities.”

Adapted from materials provided by Mayo Clinic.
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Postby becat » Fri Mar 07, 2008 2:16 am

http://www.nwcn.com/health/children/sto ... 429dc.html

Children also suffer from restless legs syndrome

07:00 PM PST on Thursday, February 14, 2008

JEAN ENERSEN / KING 5 News



Kids too can suffer from restless leg syndrome Seventeen-year-old Ali Dzienkowski loves to play the piano. Six years ago, she could barely sit still.

"It's kind of like sitting on your foot for a while and then it falls asleep," she said.

Ali was diagnosed with restless legs syndrome.

"It occurs when the child wants to sit quietly, sit and do homework, or go to sleep," said Dr. Daniel Picchietti.

Recent research shows 2 percent of children in the U.S. have the condition, making it more common than epilepsy or diabetes. Still, RLS can be tough to diagnose, as Ali's mom Karla can attest.

"We saw numerous doctors. It was one of the hardest things I've ever went through," she said.

Related Content
Restless Legs Syndrome
That's because many doctors are not familiar with the condition in children. And a key symptom, intense leg pain, is often dismissed as growing pains.

""In addition, most children with restless legs have jerking in sleep. As a result of this impact on sleep, the children become irritable and have difficulty in school," said Dr. Picchietti.

Side effects that are often mistaken for ADHD or hyperactivity.

While the exact cause of RLS is unknown, Dr. Picchietti believes genetics does play a role.

"There's now been a gene isolated that accounts for about 50 percent of RLS cases. In children, it very often runs in families," he said.

That's why finding a specialist is key. While there is no known cure, there are treatments.

"Avoiding caffeine, keeping a regular sleep schedule," said Dr. Picchietti.

In more severe cases, like Ali's, iron supplements and medication are also used. Exercise helps, too.

Ali and Karla want other families to know they're not alone.

"There is hope, there's treatment, and let's find a cure together," said Karla.
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Postby Aiken » Fri Mar 07, 2008 3:29 am

Regarding becat's story above--

I actually saw that locally and wanted to post it here, but KING5's website is so screwy that I didn't want to sic it on anyone. :) NWCN looks like it might be better.

If you can get the clip to play, you might be interested that I looked up the "imprint: XXXX" line from the label on the pill bottle shown at the end, and it was Mirapex.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
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