New member - 8 year old son diagnosed at 6 with RLS/PLMD

WED/RLS occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
lbpederson
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New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby lbpederson » Tue Mar 19, 2019 9:57 pm

Since my son was born in 2011, he has not slept well. We first noticed he wouldn't nap or sleep through the night the way most babies eventually do. By age 3 we knew based on his behaviors something was not right. At age 5-6 we went to a psychologist and had him evaluated and he was diagnosed with unspecified ADHD, DBD and ODD. But we were still concerned about his sleep so at age 6 he went to Children's and had a full on sleep study with an EEG where he was diagnosed with RLS/PLMD. From there we tried Gabapentin, Clonidine and even Pramipexole (which is not FDA approved for children). Nothing helped. We then transferred to the Mayo Clinic and they found our son's ferritin to be very low. First iron infusion helped quite a bit. A year later we did not have the same success. Now with iron supplement his level is good but his suffering is the same. We have spent years trying to find him help. RLS has effected his academic and social development and has impacted our family dynamics in ways we could have never imagined. Every single day is a "let's wait and see what chaos today brings......"
Just looking for other parents who are walking a similar path. Looking for hope.

Rustsmith
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby Rustsmith » Tue Mar 19, 2019 10:14 pm

Since you went to Mayo, you might give some consideration going to Dr Shalini Paruthi at St Lukes Hospital in St Louis. She has RLS herself and one or her special interests is RLS and other sleep disorders in children.

Also, the RLS Foundation has a number of publications on pediatric RLS. This is a special area of interest to them because the Executive Director's daughter has had RLS since she was about your son's age.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby ViewsAskew » Thu Mar 21, 2019 12:26 am

lbpederson wrote:Since my son was born in 2011, he has not slept well. We first noticed he wouldn't nap or sleep through the night the way most babies eventually do. By age 3 we knew based on his behaviors something was not right. At age 5-6 we went to a psychologist and had him evaluated and he was diagnosed with unspecified ADHD, DBD and ODD. But we were still concerned about his sleep so at age 6 he went to Children's and had a full on sleep study with an EEG where he was diagnosed with RLS/PLMD. From there we tried Gabapentin, Clonidine and even Pramipexole (which is not FDA approved for children). Nothing helped. We then transferred to the Mayo Clinic and they found our son's ferritin to be very low. First iron infusion helped quite a bit. A year later we did not have the same success. Now with iron supplement his level is good but his suffering is the same. We have spent years trying to find him help. RLS has effected his academic and social development and has impacted our family dynamics in ways we could have never imagined. Every single day is a "let's wait and see what chaos today brings......"
Just looking for other parents who are walking a similar path. Looking for hope.


Must be so frustrating as well as heartbreaking. All of you are going through the wringer with this.

I have found that my ferritin needs to be higher than is considered "high enough."

I am wondering...now that his ferritin is higher, have you tried any of those original medications again? Not sure if that is an option for him.
Ann - Take what you need, leave the rest

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.

lbpederson
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby lbpederson » Thu Mar 21, 2019 8:58 pm

Rustsmith wrote:Since you went to Mayo, you might give some consideration going to Dr Shalini Paruthi at St Lukes Hospital in St Louis. She has RLS herself and one or her special interests is RLS and other sleep disorders in children.

Also, the RLS Foundation has a number of publications on pediatric RLS. This is a special area of interest to them because the Executive Director's daughter has had RLS since she was about your son's age.


I should have mentioned that we are going to the Mayo here in MN. St. Louis might be a bit of a hike. :wink:

I have started following the RLS Foundation and became a member last year (my son was even highlighted on their website in October in honor of RLS Awareness Day-proud mamma!)
I will have to look into more of their special interest publications
Thank you.

ViewsAskew
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby ViewsAskew » Thu Mar 21, 2019 9:32 pm

lpederson - I'd call the Foundation. The staff are so accessible. If Karla is around, she will talk to you. She is in the medical field and her daughter had terrible RLS as a child. She devoted herself to finding help for her daughter as well as all other children. It isn't an easy road because there are so few kids suffering as your son is. Talking to Karla might be very helpful.
Ann - Take what you need, leave the rest



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.

RichardC
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby RichardC » Fri Mar 22, 2019 5:54 am

Hi, lbpederson

Try skipping rope.

My son is 6, he also have RLS from 2 years ago, I shake his feet 5 -15 minutes when he start night sleep every day. I tried a lot ways to help him to reduce his RLS when sleep, but nothing work.

In one month ago, I tried Chinese medicine, and doctor gave us tranditional Chinese medicine, 3 times per day, and we continuily take around 3 weeks, it seems a little better. Doctor said this medicine is for increasing body inner recycle, like skipping rope also good for this. That night we started to skip rope, but its hard for 6 years old boy, only 20 times, but next day his get good skipping rope, he get 1,100 times before dinner, get a lot sweat, that night, he sleep well. I thought he should be exhausted, not improved, just luck. I ask him keeping do that till sweat every day, he do it so, until yesterday, he only jumped 200 times, but his RLS never happend again in this week, and stop taking medicine, either.

Try it, better than noting.

By the way, his RLS happen in every between his toes.
Compare with other child, he is not easy to get sweat when play.


Richard

lbpederson
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby lbpederson » Thu Mar 28, 2019 8:34 pm

ViewsAskew wrote:lpederson - I'd call the Foundation. The staff are so accessible. If Karla is around, she will talk to you. She is in the medical field and her daughter had terrible RLS as a child. She devoted herself to finding help for her daughter as well as all other children. It isn't an easy road because there are so few kids suffering as your son is. Talking to Karla might be very helpful.


Thank you so Much! I will definitely make a point to reach out to Karla at the Foundation.

lbpederson
Posts: 4
Joined: Fri Mar 15, 2019 9:37 pm

Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby lbpederson » Thu Mar 28, 2019 8:37 pm

RichardC wrote:Hi, lbpederson

Try skipping rope.

My son is 6, he also have RLS from 2 years ago, I shake his feet 5 -15 minutes when he start night sleep every day. I tried a lot ways to help him to reduce his RLS when sleep, but nothing work.

In one month ago, I tried Chinese medicine, and doctor gave us tranditional Chinese medicine, 3 times per day, and we continuily take around 3 weeks, it seems a little better. Doctor said this medicine is for increasing body inner recycle, like skipping rope also good for this. That night we started to skip rope, but its hard for 6 years old boy, only 20 times, but next day his get good skipping rope, he get 1,100 times before dinner, get a lot sweat, that night, he sleep well. I thought he should be exhausted, not improved, just luck. I ask him keeping do that till sweat every day, he do it so, until yesterday, he only jumped 200 times, but his RLS never happend again in this week, and stop taking medicine, either.

Try it, better than noting.

By the way, his RLS happen in every between his toes.
Compare with other child, he is not easy to get sweat when play.


Richard



Thank you Richard! Good idea. We will give it a shot! Fortunately our son LOVES to exercise plus they just started "Jump Rope for Heart" at his school. Great way to introduce it to try to help his RLS symptoms.

badnights
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby badnights » Tue Apr 02, 2019 8:24 am

I've moved this topic into the Special Populations forum so that it's easier to find for people searching for help for their children. A shadow topic has been left behind in the Just Joined forum to help re-direct people here.

The Foundation has a number of brochures and a webinar dealing with children with WED/RLS. The brochures are listed at https://www.rls.org/member-portal/publications and the webinars at https://www.rls.org/member-portal/webinars
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

dzroach
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby dzroach » Fri Apr 05, 2019 11:55 am

ViewsAskew wrote:
lbpederson wrote:Since my son was born in 2011, he has not slept well. We first noticed he wouldn't nap or sleep through the night the way most babies eventually do. By age 3 we knew based on his behaviors something was not right. At age 5-6 we went to a psychologist and had him evaluated and he was diagnosed with unspecified ADHD, DBD and ODD. But we were still concerned about his sleep so at age 6 he went to Children's and had a full on sleep study with an EEG where he was diagnosed with RLS/PLMD. From there we tried Gabapentin, Clonidine and even Pramipexole (which is not FDA approved for children). Nothing helped. We then transferred to the Mayo Clinic and they found our son's ferritin to be very low. First iron infusion helped quite a bit. A year later we did not have the same success. Now with iron supplement his level is good but his suffering is the same. We have spent years trying to find him help. RLS has effected his academic and social development and has impacted our family dynamics in ways we could have never imagined. Every single day is a "let's wait and see what chaos today brings......"
Just looking for other parents who are walking a similar path. Looking for hope.


Must be so frustrating as well as heartbreaking. All of you are going through the wringer with this.

I have found that my ferritin needs to be higher than is considered "high enough."

I am wondering...now that his ferritin is higher, have you tried any of those original medications again? Not sure if that is an option for him.


Hi lbpederson - your comments regarding your son's symptoms are exactly what we are going through. My son is 6 and was diagnosed with PLMD at 4-yrs-old. We have been treating his symptoms with iron therapy but his ferritin levels haven't improved. We are at a loss what to do. Have you found that the Mayo clinic has helped? We feel terrible for him because you can tell he's tired and cranky. It's affected him socially and academically as well.

stjohnh
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby stjohnh » Fri Apr 05, 2019 1:37 pm

dzroach wrote: My son is 6 and was diagnosed with PLMD at 4-yrs-old. We have been treating his symptoms with iron therapy but his ferritin levels haven't improved. We are at a loss what to do. Have you found that the Mayo clinic has helped? We feel terrible for him because you can tell he's tired and cranky. It's affected him socially and academically as well.


Hi dzroach, Welcome to the RLS community forums. You have already found out that there are folks that have similar problems to your son's and yours. Lots of helpful and supportive information from the folks here.

How low is his ferritin? If he has been on oral iron and his ferritin is still low, then the next step is IV Iron infusions.

RLS is caused by BID (Brain Iron Deficiency). Many adults with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. There is not very much data on children available. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy for adults and is recommended for children. If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

badnights
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby badnights » Mon Apr 08, 2019 4:39 am

It's good to read the whole thing, but here's the consensus-based guidelines for IV iron in children with WED/RLS:

BEGIN EXTRACT
6.2.3. Expert-consensus clinical recommendations
Many children with RLS/PLMD have significant comorbidities and suffer for many months before they are diagnosed. IV iron sucrose was found to be safe and effective in the above Class IV study, as well as in another Class IV study in 45 children with ID anemia who had been refractory to oral iron. Additional efficacy and safety data for pediatric IV iron therapy to treat ID anemia is summarized in a recent review. A lack of evidence has no doubt contributed to the hesitancy of practitioners administering IV iron in children with RLS and PLMD. The IRLSSG task force, based on clinical experience and solid data in adult RLS, recommends that IV iron sucrose (3–6 mg/kg) (max 120 mg) can be considered for pediatric RLS/PLMD if performed in the setting of an infusion center with pediatric experience provided the following occur: a prior oral iron treatment of at least 3 months has not produced an adequate benefit or was discontinued because of adverse effects and there has been no appreciable rise in serum ferritin levels with 3 months of oral iron treatment. IV iron can be considered without a prior oral iron trial if significant comorbidity is present that will impair iron absorption. A serum ferritin ≥50 μg/l is considered an adequate therapeutic target in children.

Caution should be exercised in children with mitochondrial disorders, or when there is an active significant systemic inflammatory process as there are theoretical reasons to be concerned that infections might worsen following iron treatment. Great care should also be taken to prevent the risk of IV drug extravasation. Children with hemochromatosis should not be treated with iron for RLS.
END EXTRACT
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

kcrowley
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby kcrowley » Thu Apr 11, 2019 2:14 am

Greetings! First and foremost you are not walking this path alone. I am the mother of a 10-year-old who was officially diagnosed around age 6/7, and as I type this she is currently losing her mind at the idea she has to sleep tonight!!! My husband and I are presently exhausted and hoping she will eventually give in to sleep...maybe...

I wish I could type something awesome and say it is going to go away...but we both know that is highly unlikely at this time. That said, I can tell you that it gets better (at least for the most part) over time as you find ways to help them cope and find your ways to deal.

My daughter has had success on gabapentin and colinodine. She has also had fantastic success with CBD, relaxis (which she is currently rebelling against) and of course an insanely crazy schedule with cheerleading that allows her to work it out before bed!

Mackenzie's story was featured in an RLS newsletter two years ago (Winter 2017) I definitely appreciate your proud momma moment as I am one too! We have successfully managed to get her on a 504 at school, reduce testing stress (especially after a very bad anxiety attack for a multiplication test a few months ago that landed her in a therapeutic hold on morning in the nurses office) and a clear expectation with all her teachers that she does not have ADHD and no she will not sit still.

We live your chaos. We never know what a new day will bring. Some days she is the model of a "perfect angel" other days she's something from the exorcist, and I balance trying to keep her calm while at the same time managing my older daughter and husband who feel like they are in horror film.

I landed on the boards tonight because she's having "one of those days" and saw your post. I wish I had some answer to make it better I don't. But I can tell you that I have long since stopped fighting certain battles....she needs TV to sleep...she can have her tablet...she needs the light on...I leave the light on....she doesn't want blankets...no problem. She wants the AC on and its 30 degrees out...I turn the AC on...we use a lot of essential oils, worry dolls, and a myriad of coping skills from breathing to visualizing. Anything to get her to a calm place to sleep.

I don't fight where she falls asleep....and often don't move her until I know she's asleep (typically about 30 minutes after the first round of involuntary jerking slows down). I pray for a full 6-8 hours of sleep but on the flip side of I don't get my nightly 4/4:30 AM visit (which is rare) I am usually up in a panic wondering what's wrong! LOL!

I consider us blessed that we know she has RLS (it runs hard in the family and her grandfather, my father, finally accepted he has RLS/PLMD at age 65 and often jokes that Mackenzie gave it to him) :). Mackenzie knows what she has. She can articulate it (even though she rarely does because she doesn't talk to others snout it easily - she's very self-conscious about it). And she's able to clue us in when she's having a bad day so we can help her manage. The more we educate her, the more she continues to learn to self-help.

Feel free to message if you're having one of those days...there are other moms here who may be having one too...Well at least this mom anyway....and stay strong as you are not walking this path alone momma!!! This community is loving and supportive and always ready to help hold each other up!
Mother of a 8 year old with RLS/WED and Insomnia
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Think Different!

Polar Bear
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby Polar Bear » Thu Apr 11, 2019 9:30 pm

kcrowley - thank you for your post.
Betty
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ViewsAskew
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Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Postby ViewsAskew » Thu Apr 11, 2019 11:12 pm

Not happy to see all these suffering children, but so happy some of the parents are able to connect and share stories.
Ann - Take what you need, leave the rest



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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