Interesting-RND aka Child Fibro?

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TeNNiSd0C09
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Date Joined Jul 2007
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   Posted 7/16/2008 4:23 PM (GMT -7)   
My mom talked to my doctor today. Im supposed to go to the Childrens Hospital in Birmingham this fall...well my doc has been talking to the doc I will see there. My doc doesnt know much about Fibro so he talked to the doctor there about it and everything. Well, he gave us a website to check out so, I did. It isnt really about Fibro, but its very similar and deals with children. I would assume that he thinks I have RND it stands for Reflex Neurovascular Dystrophy. Its likely, its basically Fibro in children, but there is alot of good onfo in the "resources" section of the site.
 
 
I've never heard of this, but the symptoms are basically the same. It says that most medications dont help it, unless its antidepressants or sleep meds for either of those problems. But, it characterizes intense therapy sessions. This is from one of the best RND docs from the Philadelphia Childrens Hospital. They have a program for children, inpatient or outpatient, that consists of PT and occupational therapy, water, and music therapy, and counseling. It lasts like 3 weeks or something. But it seemed very interesting to me. I thought a few of you would maybe like to read about it.
 
I sure was interested, but thats just me...

"Healing is an energy phenomenon. Hope is another word for Healing.
"Cracks in the concrete are just reminders that you fall apart no matter how strong you are"
"Sometimes it is best to forget what you feel and remember what you deserve"
"Im going to smile like nothing is wrong, talk like everything is perfect, act like its all a dream, and pretend its not hurting me."


TeNNiSd0C09
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Date Joined Jul 2007
Total Posts : 1303
   Posted 7/18/2008 11:58 AM (GMT -7)   
I was just wondering, but has anyone actually heard of this? (because I never have, until now...) I have done alot of searching, and I'd never heard about it...

"Healing is an energy phenomenon. Hope is another word for Healing.
"Cracks in the concrete are just reminders that you fall apart no matter how strong you are"
"Sometimes it is best to forget what you feel and remember what you deserve"
"Im going to smile like nothing is wrong, talk like everything is perfect, act like its all a dream, and pretend its not hurting me."


getting by
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Date Joined Sep 2007
Total Posts : 40574
   Posted 7/18/2008 12:13 PM (GMT -7)   
This is new to me Tennis, but that isn't saying much. I have not researched at all. I wonder if this would be like young adult fibromyalgia???

I don't think of you as a child, I guess that is because you are on a much higher level.

Hope all goes well for you.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Chutz
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   Posted 7/18/2008 12:46 PM (GMT -7)   
Hi Tennis,

New to me also so I searched around a bit. The University of Washington/Seattle has a program for this if anyone in this area is interested. They did link to the site you mentioned also. Seems like this disorder differs from fibro in that it is more often in the upper body but can be all over. Also can be one sided or in conjunction with fibro. Again most are female, about 80%. Something to research if you think you have someone under 20 with severe muscle pain.

CHutz
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


TeNNiSd0C09
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Date Joined Jul 2007
Total Posts : 1303
   Posted 7/18/2008 6:26 PM (GMT -7)   
I looked it up once. I havent found ALOT to read about it, only some. But, what interests me most is the program. I keep wondering if it would truly help. I mean, theres nothing to lose I dont guess, except it would cause alot of pain, but I think it owuld be worht trying. The only problem is I dont think there are any programs close to me, and also the fact that it would keep me out of school. I honestly wouldnt have a problem with this, I would totally go if I got the chance to. Its probably stupid...its crazy when the pain first starts, you think it will go away tomorrow. Tomorrow the pain is still there...so you think it will take a week or two. But, after that its still there...then you lose hope in it ever going away. But, then I was reading that and it gave a good review of the people whom tried the program. Then, that causes me to wonder if maybe the pain really could be taken away or just lessened, that would be great. However, at the same time I wouldnt get my hopes up, I gave up on that a long time ago...

So, it confuses me alot. Im not sure what to think. It will never go away and I will deal with it forever? Will it always hold me back? Could it go away? Would it help? I have no hope? But should I have hope? Or will that hope continue to be crushed???

I just dont know. Honestly, if I had the chance to do it, I would go in a heart beat... I think I decided that if theres a chance, Im not going to pass anything up, because things are possible, and I just want to have hope in it. But, then, I dont want false hope. Its all so crazy. I didnt want to go to the doc because I didnt think he oculd help me, but now, Im not sure if I should want to go or not. Its just all confusing. I like knowing there could be something out there for me, but at the same time, I wish he hadnt told me and got me all stirred up....

"Healing is an energy phenomenon. Hope is another word for Healing.
"Cracks in the concrete are just reminders that you fall apart no matter how strong you are"
"Sometimes it is best to forget what you feel and remember what you deserve"
"Im going to smile like nothing is wrong, talk like everything is perfect, act like its all a dream, and pretend its not hurting me."


Mrsppmrxky
Regular Member


Date Joined Jul 2006
Total Posts : 380
   Posted 7/18/2008 8:46 PM (GMT -7)   
If you are talking about the Children's Hospital in Birmingham Alabama, I have heard it is a very good hospital!

Marlee2
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Date Joined Aug 2007
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   Posted 7/19/2008 9:20 AM (GMT -7)   
I'm glad you honered us with a visit Christi. tongue You must be keeping busy.
 
You are so young and they are making progress with fibro so I think you have every reason to be hopeful they will find better meds to control it or even get to the root and cure it. Hope is something we can't afford not to have in our lives.
 
If this program has been tried and tested on other young people it would be worth it. I think you could use the therapy to get everything out that bothers you and maybe learn how to handle things better in your life. I know you deal with issues that most young ladies don't deal with.
 
I'm started water therapy myself on the 28th. As long as they are not pushing you too hard and you tell them what you can and can't take it might be a good idea. I'm not going into the water therapy with any great expectations but with an open mind. I know I can sure use the exercise so I will go for as long as my ins pays.
 
These cures that sound too good to be true, are. But the right exercise helps us and that is just common sense. It's the programs that give you a dozen different herbs to take with a promise to cure you that you want to stay away from. I also believe in taking vitamins that our bodies need.
 
luv and hugs
Marlee
 
 
Forum Moderator Fibromyalgia
 
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TeNNiSd0C09
Veteran Member


Date Joined Jul 2007
Total Posts : 1303
   Posted 7/19/2008 9:34 PM (GMT -7)   
Yes, the Childrens Hospital in Birmingham, they are greta there, I know. They saved my little brother when he had a brain tumor 10 years ago. They have always been wonderful to our family!

Yea, I try to have hope, I figure I might as well! o0o the 28th is my birthday! =]
You mentioned not letting them push me too hard and stuff...thts what I would be worried about. In the program, what they basically do is have intense therapy 5 hrs a day, for like a week! Yea, I kno. Sounds impossible! The idea is that to keep working through it re-trains the body about how the nerves react to things, basically. It was quite interesting really, but I would be worried that I would do everything and be in so much pain and it not work...but I guess it would be worth a try! I really dont have anything to lose! And if it worked, that would be great also! But, after that, it slows and they teach home exercises. The key is to stay active all the time. I probably couldnt do that, but if there were a chance it owuld help, why not try..

But, I dont think I would be able to do that. I dont believe they have a program near me, and I would have to miss school, which I could technically do...even though I hate too. But, I think it would actually be kind of fun... Besides I could use the exercise! =]

"Healing is an energy phenomenon. Hope is another word for Healing.
"Cracks in the concrete are just reminders that you fall apart no matter how strong you are"
"Sometimes it is best to forget what you feel and remember what you deserve"
"Im going to smile like nothing is wrong, talk like everything is perfect, act like its all a dream, and pretend its not hurting me."


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 7/20/2008 9:06 AM (GMT -7)   
Wow Christi I'm glad your little brother is okay.
 
I know your birthday is the 28th. tongue
 
Your so much younger than me I'm sure you can stand more than I can. This program is one on one therapy for however many weeks my ins will pay and then 3 to 4 weeks of free use of the Wellness Center to do the exercises on my own.  After that I will have to join the Wellness Center or find somewhere closer to join. That's the draw back I'm going to have to do a lot of driving to do this. This Wellness Center does have a lot to offer and I wish it wasn't so far away or DH and I would both join. He loves working out on the machines and I have not seen that part of it yet. It's the same place I go for massages.
 
As long as your parent's ins pays for it what do you have to lose. You know your limits and just cause you are young doesn't mean you can't speak up if they expect too much.
 
I do believe moving, specially in water is good for us.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin

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