Interesting-RND aka Child Fibro?

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.

www.childhoodRND.org

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...

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

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....

I'm glad you honered us with a visit Christi. 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

 

 

Wow Christi I'm glad your little brother is okay.

 

I know your birthday is the 28th.

 

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