Tired Mom - desperate for support

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kcrowley
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Joined: Sun Jul 13, 2014 10:22 pm
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Tired Mom - desperate for support

Post by kcrowley »

Greetings all -

First and foremost I just want to say that my thoughts and prayers go out to everyone out there (especially everyone in the forum) who suffer from RLS/WED and to any parents of child suffers. I am going to do this post a little unorthodox. Information about my daughter and her story is below. In short - 6 year old diagnosed by doctors at Monitfore Children's Hospital in NY with RLS/WED and Insomnia! <---- I'm a tired mother.

My plea

Lately, over the last two weeks, my daughter has been been having a lot of difficulty with her symptoms. They are presenting more during the day. (We have had a lot of rain lately and it is very humid.) She has also begun to tell me that her arms are starting to hurt her. Her sleep is becoming more broken again, 5-6 hours before waking up (rather then the 7-8 she was getting for the past 2-3 months). She has a need to touch me more (this is very common for her. She likes to rub her hands up and down my arm.) She requires a lot more pressure on her legs and she can't sit still for more then 2-3 minutes which is uncommon for her, as she usually she can go for longer periods of time before moving her feet. And her urge to move is greater and it is a need to move her legs and arms, not just her feet. Presently she is taking 600mg of gabapentin (neurotin) - 300mg between 2 - 5pm and additional 300mg around 8pm. I have also started to supplement her diet with 35mg of iron and 130mg of magnesium now that I can get her to swallow pills. My daughter is a gymnast, and is very active which does help. However, there is clearly a difference in her symptoms on the days the she engages in less activity. Though she seems to have a bit less desire to do so.

Is it possible she is augmented? She has been on the drug for almost two years increasing in dosage...

I am usually the calm one with my daughter but I am tired and it is starting to become difficult to help her overcome her symptoms which she best describes as "worms," "creepy crawlies," "they just hurt," "needles being stabbed in me," and "owww make it stop mom..."

In the past we have tried the following;
  • soap (yes a doctor recommended that once)
  • heavy blankets (she would rather I sit on her legs but she only weighs 42 pounds!)
  • ice (temporary relief)
  • chillow (occasionally works)
  • advil (sometimes it seems to do something)
  • icy hot (doesn't help)
  • blue aloe gel, like the stuff you put on after a sunburn (doesn't help)
  • rubbing her legs (temporary relief)
  • melatonin (sometimes works)

I am looking for new ideas, to try to keep her asleep, in her bed and pain free. Yes we have a bedtime routine because of the insomnia. Yes she knows she has RLS/WED and she does all kinds of her own running, jumping, stretching to try to get the "owies" out, but for some reason her and I (her dad tries but it's difficult for him) are having a rough go and I am hoping someone out there has some ideas for us! :) Please and thank you in advance! :)

For those of you interested in her story...

Her Story

My daughter has never been a child who sat still. The second child, I figured she was keeping up. (I was very clear when she started school - do not call me and tell me she had ADD/ADHD. She has RLS/WED - she hears you just fine, she would just rather walk around while you talk :D) Even in the womb she never stopped moving. I figured she was just active. And while I do have my own form of chronic nerve pain, it is very much managed and I am very fortunate. I only mention this because it was my own medical issues and my insistence that I was not a neurotic mother that I was able to find a neurologist who believed I was not crazy and either was my now 6 year old daughter who from at the age of 9 months showed her first signs of RLS/WED. Over the course of 4 years she I sought help from many in the medical field to get my daughter treatment. I refused to accept answers that included "active sleeper," "growing pains," "normal developmental pains," "it will pass," and "she will grow out of it." It wasn't until a neurologist all but humored me by prescribing her 100mg of gabapentin to make me go away that I begin to think there was a glimmer of hope. That was until I began suffering my own nerve pain and when the neurologist told me gabapentin was a good drug for such symptoms, I declared aI knew the drug, my daughter was on it. The "ah ha" moment I had been waiting for for many years was finally coming to light. He uncovered a history of RLS/WED in my family that traces right up my side of the family on my fathers side. In many ways, the fight to get answers for her provided answers for many in my family silently suffering (all thanks to my 6 year old). However, the road to get there was not easy and I have learned that being told "your crazy" is par for the course.

Reading the boards I know we are fortunate thanks to Montifore Children's Hospital and the doctors that treat her there. Since our "ah ha" moment, they have never ever once said, she is crazy and they go out of their way to help ease her symptoms. My daughters school also has acknowledged her disease and accommodates her with a 504 service plan that includes additional opportunities to move around. They go out of her way to support her and allow her the flexibility she needs to be as "normal" as possible during the school day.

For those of you who may have a child who you may think has RLS/WED, I encourage you to not give up. We went through a lot to get answers. My daughter has had lots of tests and procedures including; several sleep studies, removal of her tonsils and adenoids (and yes a neurologist missed her snoring on a sleep study as her tonsils touching), nerve testing, allergy testing (dairy sensitivity), EKG ad subsequent heart monitoring because of a "possible arrhythmia" on her EKG that was normal, MRI's, Cat Scan's, X-rays...you get the picture.

As a parent of a child with RLS/WED, my best advice if you think your child may have it is to not stop until you get answers. There are doctors out there who will help and not think you and your child are crazy. It's unbearable at times watching her as I can visibly see her in pain and I know that she is always going to have it, but at least I know she is not suffering silently and she is getting the best help around. - K
Mother of a 8 year old with RLS/WED and Insomnia
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Polar Bear
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Re: Tired Mom - desperate for support

Post by Polar Bear »

My heart goes out to you and your daughter, and well done you for getting this far and actually obtaining a diagnosis.
Poor child and poor mom.
You are already supplementing her diet with iron and magnesium which many find beneficial, have you actually had her Ferritin Serum level checked, not usually done in routine bloodwork and although docs will accept 20 as normal, us WED sufferers need it to be up around 100 - adult figures. I don't know how this applies to a child but a first step would be to have this test done.

At present she is taking gabapentin and I think this drug is not known for augmentation issues.
My understanding of melatonin is that it assists the sleep cycle but I wouldn't have thought that it would actually do anything for the WED crawlies.
Many of the other drugs that would be a further option for treatment are very strong.

There are others here on the Discussion Board who are much more informed with regard to medication but my initial reaction would be to email
Dr Buchfurer, he is based in California and answers all emails. His email address is - somno@verizon.net.
These emails - many hundreds of them - are also posted on his letters pages on the Southern California site http://www.rlshelp.org/

Before using medication I found that putting my feet/legs into a bucket of icy water for about 20 minutes gave me enough relief to get over to sleep.
Not an easy thing to get a child to do, the icy cold can be pretty painful.... I guess it's counter-stimulation at work.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Tired Mom - desperate for support

Post by ViewsAskew »

I would echo the suggestion to email Dr Buchfurher. He truly is a gem to all of us and usually writes back quickly.

My refrigerator went out, so am dealing with madness - will try to write more later.

Hugs to both of 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.

ViewsAskew
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Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Tired Mom - desperate for support

Post by ViewsAskew »

The insomnia, it seems, is part of the disease. New research at Johns Hopkins sheds some light on why, but we still don't have many ideas on what to do about it.

The family of drugs she is taking usually knock out the insomnia. I wonder if any of the other drugs similar to it are OK to use on kids? It could be that another drug in that class would help.

Or could be that she might benefit from taking a very low dose of a dopamine agonist along with the gabapentin, taking holidays from the DA every week for two days. Then she'd not augment, either.

As noted, I have never heard of augmentation with the alpha delta ligands (like gabapentin).

Did they test her ferritin level? I'm not sure what they do with kids related to it, but it would be nice to know what it is. She's taking some iron, but I'd still like to know the level.

Do any foods seem to help or hurt? Some of notice that we cannot consume caffeine, sugars, or starches. I wonder if you've tried any diets - maybe gluten-free sugar free? - and see what happens.
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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