Toddler with possible RLS

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ziakbrown1
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Joined: Wed Feb 28, 2018 5:26 pm

Toddler with possible RLS

Postby ziakbrown1 » Wed Feb 28, 2018 8:23 pm

Hi All,

I am new here, so please bare with me. My son is now 2 and a half and we have been dealing with intermittent bouts of night wakings since he was about 8 months old. Typically, these last for around two hour and he rolls around in the crib and kicks his legs or pushes his feet against the side of the crib. The longest of these episodes (so far) lasted for about six weeks when he was 8 months old. He then seemed to sleep well for about a year with another bout of these night wakings occurring the summer before he turned two. That lasted around 2 weeks. He's been sleeping mostly fine since then. Until now. During the episode before his second birthday, I has is ferritin level checked and it was 18. We started him on an iron supplement, and are about to have his ferritin level checked again. We live in New Orleans and I cannot seem to find a single decent sleep doctor for peds, so I'm definitely always looking for recommendations on that. Also, I had my RLS begin in my first pregnancy and do still have occasional bouts. My husband does not have it, and to my knowledge, my in-laws do not have it. I'd also like to give a rundown on what happened last night. We put my son in his crib at around 8pm. He usually falls asleep at around 8:45 (sometimes later). I heard him cry out at around midnight and he did that twice before he really started crying. When I went in the room at that point, he looked to be sleeping, but I took him out of the crib and rocked him and here are my observations: he continually pushed his feet against the side of the rocker or rubbed them together. He would move his legs in almoste a gentle jerk and he rolled over to change positions twice in my arms. He is a toddler, so it's very difficult to tease out what is normal toddler behavior vs. RLS. Here are my questions:

1. What have you noticed in symptoms in your own toddler(s) diagnosed w/ RLS (we don't have an offical dx)?

2. Can, in your experience, RLS occur in bouts such as every few weeks or months?

3. Can anyone recommend a good sleep doctor that will do a phone consult?

Many, many thanks!

Zia

stjohnh
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Re: Toddler with possible RLS

Postby stjohnh » Wed Feb 28, 2018 8:43 pm

Hi Zia,

Welcome to the RLS community.

Wow. Sounds like a big problem. I have two toddler grandkids, neither with RLS, so I can't answer your questions directly.

Generally, RLS can come and go, though more commonly it is persistent.

Toddlers with RLS are rare, so if it were my child, I'd take him to one of the RLS Quality Care Centers. The closest one to you is in Houston. He is looking towards a lifetime of problems and it will be much worse if he is not treated correctly.

It sounds like he at least has PLMS, and very well may have RLS. I don't think a telephone consult will provide the information you (or the doctor) needs to make an accurate diagnosis.

P.S. Be sure and keep YOUR ferritin above 75 to decrease the likelihood of your RLS progressing.
Blessings,
Holland

Rustsmith
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Re: Toddler with possible RLS

Postby Rustsmith » Wed Feb 28, 2018 10:56 pm

Zia, I have absolutely no experience with kids, so I can only offer a few suggestions to Holland's.

1) The Foundation has a number of pamphlets on RLS & Kids. A couple are free to non-members and others require a Foundation membership. If you do not feel that you can afford the cost of a membership, give them a call and ask for a scholarship membership. Their website is www.rls.org

2) There is a book "Clinical Management of Restless Legs Syndrome", 2nd Ed by Lee, Buchfuhrer, et al. It costs about $30 on Amazon. It was written for doctors, but is understandable by those of us who do not have medical training. The book was written for RLS in adults, but might provide your pediatrician with some ideas.

3) When I lived in Houston, I was a patient of the doctor at the Quality Care Clinic in Houston that Holland mentioned. It can take a while (weeks to months) to get an appointment because he is in such demand, but he is one of the leading RLS doctors in the nation. I don't know how much experience he has with treating RLS in children, but he would likely know more about the options than any of the doctors in the New Orleans area.
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: Toddler with possible RLS

Postby ViewsAskew » Fri Mar 02, 2018 10:19 pm

Hi - I can't really help, but I was that toddler. My parents had no idea what it was; for me, it was PLMS - periodic limb movements in sleep - at that age. I didn't get waking RLS until my early teens. I know that we say RLS is while waking and PLMS is while sleeping but I am relatively sure I have RLS while sleeping. It is different from the PLMS in that I am aware of it as it awakens me - I become vaguely aware of the sensations that force me to move and bring me to consciousness, making me get up. I don't think I can stay asleep with it for long, so maybe that is the difference - with PLMS, you can stay asleep.

I know that Dr. Buchfurher will answer emails - his email address is somno@verizon.net. He might have some advice that would get you started.
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.

badnights
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Re: Toddler with possible RLS

Postby badnights » Mon Mar 05, 2018 5:53 am

The description sounds very much like RLS/WED. I am not a doctor so I don't know what other conditions might have the same symptoms. It doesn't sound like PLMS because of the obvious discomfort involved (PLMS wouldn't have the sensory component).

I have no idea if it comes and goes in toddlers like that, but I wouldn't find it surprising. I imagine it is coming and going in direct relation to his ferritin levels, and the iron supplement will hopefully keep his ferritin high enough that the symptoms stay away. But it is important to get to a WED/RLS specialist, partly because there may be another reason his ferritin is so low, and partly because there are no easy answers and you will likely need long-term consultations. The sooner you can get in at a QCC, the better off your son will be.

Besides the pamphlets the Foundation puts out (Steve's post) there are also two webinars at https://www.rls.org/member-portal/webinars (need to be a member). RLS and Kids near the top, and Children and RLS.

You're lucky in a way (not really, but here's the silver lining) to have experienced WED/RLS during your pregnancy because you might not otherwise have known what was going on. I hope everyone's ideas have given you something to work toward, and you get that appointment soon. And Holland made a good point: don't neglect yourself, either. WED/RLS does come back later in some women, so keep that ferritin up, and watch your overall nutrition.
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.

sleepdancer2
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Re: Toddler with possible RLS

Postby sleepdancer2 » Fri Mar 09, 2018 5:42 am

I am so sorry to hear your child is going through this - that's got to be so hard on you. I would encourage you to seek more than one perspective on managing your child's symptoms. There is an advantage to having a pediatric specialist such as a neurologist, also an advantage to having a sleep specialist. I would want to hear what both of those say. Admittedly I am jaded as I have a history with side effects from the commonly prescribed dopamine agonists, and have residual neurological effects from my experience. I would be beyond reluctant to allow a doctor to give these meds to a child with a developing brain unless every other effort had been exhausted and the need outweighed the risk. (I don't know that they do prescribe these for kids, just saying it in case they do.) When my periodic limb movements were at their worst, I had sensations preceding the movements. I can only describe it as like the tightening of a rubber band being wound up, and the movement was the release. Pressing against the foot of the bed was one technique I instinctually used to try to help myself. But also, the tension of the muscles during a limb movement could appear as pressing downward. From the other stories I've read, my sensations before the movements were not the norm, and was likely a consequence of the meds, but I mention that just in case your child is feeling discomfort before the movements. If they have periodic limb movements of sleep, the movements will be stereotypical in appearance and rhythmic in timing. I happen to think it makes sense that RLS can happen while asleep. That could account for a discomfort that prompts movement. RLS movements would be more random, not patterned in appearance or timing. Best wishes in finding those who can help your child.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Re: Toddler with possible RLS

Postby ViewsAskew » Fri Mar 09, 2018 8:15 am

I just saw this article today...but do not have access to it. Does anyone? Might be helpful for our parents and those who have children in their care that have RLS and/or PLMS.

https://www.uptodate.com/contents/restl ... n-children
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.

stjohnh
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Re: Toddler with possible RLS

Postby stjohnh » Fri Mar 09, 2018 4:50 pm

I don't, but the site offers a 60 day money back guarantee. One could sign up then cancel if the just wanted that article.
Blessings,
Holland

Rustsmith
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Re: Toddler with possible RLS

Postby Rustsmith » Fri Mar 09, 2018 5:34 pm

It appears that the publication is something more than just a paper since the left side of the page appears to be more like a table of content. I could find a number of papers written by Dr. Picchietti about RLS and PLMS in children.

A search on Google Scholar with simply "Picchiette RLS" turns up a significant number of hits (too many to copy the links here) and many of them appear to have free access to the publications.
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.

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Toddler with possible RLS

Postby stjohnh » Fri Mar 09, 2018 6:46 pm

Uptodate is a professional online resource primarily for practicing doctors. Kind of like a super textbook that is constantly updated. Fairly expensive but with a good reputation for providing succinct, necessary info for busy doctors.
Blessings,
Holland

ViewsAskew
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Re: Toddler with possible RLS

Postby ViewsAskew » Fri Mar 09, 2018 11:46 pm

As background about the author....

Picchietti - Daniel, that is - has had RLS since he was a kid. His dad, a doc, is an expert in RLS and was on the Foundation's advisory board at some point. Daniel went into medicine and focuses on RLS in kids. Kinda cool :-). If I had a kid with RLS and lived near him, I'd absolutely see him! His dad does not take remote patients - I've met him a few times and was about 120 miles from him. I considered seeing him but driving that far every month or two seemed too daunting to me!
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.

debbluebird
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Re: Toddler with possible RLS

Postby debbluebird » Sun Mar 11, 2018 10:06 pm

I am wondering, if what he is going through, goes along with growing spurts? Also wondering about his calcium and magnesium levels. Hope you can find good per doctor.


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