Help with Child

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.
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Tatamom
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Joined: Sun Jan 28, 2007 2:25 am

Post by Tatamom »

Hi Everyone,

I have a 7 yo dd, She is being evaluated for RLS, PLMD and OSA.

She has been describing a feeling of a spider walking on her back (but in a confined area)...90% of the time it is on her back above the waist or on her feet, 5% of the time it is on her chest, and the rest is on her face or arms or hands. These things happen any time and during any activity or resting, she was originally being woken up at night by them. She has this occur 18X/day and then gone for almost 2 months with nothing. They were originally very short in duration, but the last few has been several minutes long, but are occuring less frequently at this time.

Our neurologist has been around for 30+ years and has never seen a child like Christina. Do these things sound like what anyone has experienced?

Thanks,
tatamom

sugbrendas
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Post by sugbrendas »

I was quite suprised to learn(at our last RLS) meeting that kids get RLS.
I wonder if there is a environmental aspect to it.
Finally able to sleep on average 9 hours a night!
Brenda

ViewsAskew
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Post by ViewsAskew »

RLS is a strange disease and they don't know everything about it. Some of what she experiences is similar, but some isn't.

With RLS, the sensations - they can occur at any time, though are more likely to occur with rest - do go away with movement. Do her's go away when she moves or when you massage them?

That said, there are a few of us that have very strange sensations that don't fit the "norm". I don't know if they are RLS, a sub-disease of RLS that only some people get, or completely unrelated. We just know we get them. For me, I get what feels to me like fleas moving around on my skin. It's mostly my scalp, but is sometimes in other body parts. Sometimes it moves around rapidly from place to place, other times staying in one place. These are not the same as RLS in terms of how they feel. They are horridly annoying. They can last seconds, or days. Nothing gets rid of them. I haven't a clue as to what they are.

There are some of us who have strange itching sensations, too. We've been known to wake up with bloodied skin. Again, I don't know if this is RLS, but those of us with this also have RLS. Cooincidence? Another form? Regardless, it is very, very annoyingl

The problem is that no one has researched RLS much until recently. And, even now, they only recognize the most classic symptoms. It will probably be a long time before anyone determines what these subset of symptoms are or belong to.

I hope you find something that makes her more comfortable at the least - and the cause and true solution at the best. If you do, come let us know.
In the meantime, feel free to visit here as much as you want, even though I don't know how much we can help you.
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.

Tatamom
Posts: 6
Joined: Sun Jan 28, 2007 2:25 am

Post by Tatamom »

Thanks for the info. Her neuro says there is a very short list of what could cause her symptoms. Unfortunately the list includes MS (1 in 3million 6yo will get it...that would be a comfort, but she has had a type of cancer that only 4 kids in the country have had) and RLS. When she has these tingling feelings nothing makes them go away, they even start when she is moving.

I call her my medical mystery child. So far she does not have enough symptoms to have a confirmed diagnosis of anything neurological except PLMD and OSA. She is being treated like it is RLS, with iron. However until we have her apnea conquered our neuro will not look any further. I keep writing down her symptoms and someday he will look at them and find a pattern.

Susanne

jan3213
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Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Susanne

My heart breaks for you and your child. As Ann said, please feel free to come here any time. I don't know if we can help you, but you may find something that helps. People come and go here all the time. There are other parents whose children have "sensations" that may or may not be RLS.

If nothing else, we care here, very much. You may feel the need to just get things off your mind. People are great here and will listen. We understand.

Take care.

Jan
No one is alone who had friends.

ctravel12
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help with child

Post by ctravel12 »

Hi Susanne and welcome. I will definitely keep your little one in my prayers. She is fortunate to have you for a mom.

I am glad that you are wriiting down all of her symptoms as one day they will be able to help you, but for the time being I hope she is not in any type of miserable pain.

Anytime you want to just talk, vent or whatever, you have found a wonderful, caring and supportive group. We are here for you no matter what.
Charlene
Taking one day at a time

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