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04/09/2012 08:56 AM

New Member (RSD Mom)

msatre
 
Posts: 18
New Member

Hello,

I just wanted to introduce myself. My active 10-year-old daughter injured her foot on her bed 7 months ago. She limped for one week and then everything seemed to go back to normal. Two weeks after her injury, her pain returned and she developed a hematoma on top of her foot. Our lives have not been the same since. She has been tested for autoimmune diseases, bone infections, skin infections, fractures, and bleeding disorders. With flare-ups every other month, the pain has spread from her foot to the top of her thigh. She complains of stabbing pain in her foot, pins and needles in the bottom of her foot, and "acid" in her calf and thigh. Watching her suffer in pain has been the hardest thing that I have ever had to do in my life. It is so hard to watch her suffer in physical therapy to learn how to walk again and then lose all of her progress with another flare. She has not been able to wear long pants since November and has not been able to wear a shoe since January. While I administer medications, force her to perform physical therapy, and take her to see pain specialists, physical therapists, orthopedic physicians, hematologists, psychiatrist, etc., I keep looking for that magic wand to help her get better or crystal ball to help guide me in how I can help. If I ever find either of these items, I will make sure to share them with all of the others who suffer from this terrible disorder!

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04/09/2012 09:23 AM
luckyduck

Welcome Msatre,

You daughter has RND. Here's a brief description of it.

(it's what they call RSD in children)

http://en.wikipedia.org/wiki/Reflex_neurovascular_dystrophy

Please continue taking her for the therapy and keep her as stress free as possible.

If she finds baths to be calming you can put 2 cups of epsom salt in the bath water and have her soak for a minimum of 15 minutes. Make sure to tell her not to rub her eyes with the water as it tends to dry the eyes out. Keep as much sugar out of her diet cause sugar, soda pop and caffeine make the flairs worse. I hope she continues to make progress at her therapy. It does say in the article on wiki that flair ups do happen but it is important for her to keep going for the therapy. I wish you and her all the best. If there's any questions you have always feel free to ask us. We may not have the answer but can hunt for you if needed. hugs and prayers, Lucky

Post edited by: luckyduck, at: 04/10/2012 05:04 PM


04/09/2012 09:50 AM
revvanbus
revvanbus  
Posts: 2032
VIP Member

Welcome Msatre, to the last group you ever wanted to join. We have several moms, dads, family members of young people who have this awful disease and I feel for you and for your daughter. The only good thing about young folks with the disease is that they are more likely to go into remission. It is what we hope for her and you.

In the meantime, please feel free to search our past emails and topics. there is a wealth of information. We are willing to answer your questions but know that most of us are fellow sufferers with your daughter and not medical professionals. We answer from our own experiences with the disease and the treatments and from readings on the subject. If you have personal questions, please use the PMs (personal messges). All the leaders and most other members are willing to help you out.

Please do not use or allow anyone else to use ice on her affected limb. The syndrome can constrict arteries and capillaries restricting blood flow. If you add ice, damage and even permanent damage can happen. Ice is not nice to RSD sufferers.

Sending hugs to you and your daughter and prayers that her pain will ease and her walking will become easier.


04/09/2012 06:54 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Hi msatre,

My heart goes out to both you and your daughter. This intense suffering makes me so angry when I hear of it in a child. Truly, I wish I had a magic wand to hand you to help her recover.

It is great that she's so young, though, in that her chances of going into remission are much greater! As a mom myself, I also know that you are being pulled through something so painful that I hope you will find ways to take good care of yourself and help you get through this, too. This group might be part of that, because this is a good and supportive group of people that will help you find answers and care about you and your daughter.

I'm frustrated not to know much about RSD in children and have no great recommendations for you. It sounds like you've been very wise in helping her have some kind of relief with medications and also pushing her to keep moving. It's so hard to do when the pain is this high. I applaud you for seeking answers wherever you can and if I find something that I think would be helpful, I'll send it your way, but most likely a pediatric pain management doctor or specialist would know the most about how to help her. I can pray for her and I will. I sure hope you'll let us know how she does and more than anything hope to hear that she is in full remission from this!

Best to you both,

gail


04/09/2012 10:06 PM
cindy61
cindy61  
Posts: 540
Member

Hi msatre,

That is the hardest thing a parent can go through is when their child is in pain. I am so sorry to hear about this. As a parent of 4 when one is hurting you want them to be little kids again where you can kiss their pain away.

I am not a doctor but her symtoms do sound like RSD. The good part is you got her to all the right doctors right away. I will be praying for her that since she got help right away that if it is RSD it will go into remission or go away right away. Young bodies do heal faster.

I will be praying for her to be healed and that she can get through the physical therapy without to much pain. I will also pray for you because I know how hard it is to have a child in pain. My son when he was 16 was in a terrible car accident. (no he was not the driver) Their car was crossing a road and the boy driving did not look both ways and a car at 55 was headed right at them. My son was in the back seat with his belt on. That is right where the other car hit them. The car was spilt in two and he was thrown into a cornfield. All the doctors, policemen and firemen could not believe he made it through that accident with only a severe concusion. The doctor told me most anyone would have been killed or never walk again. That he truely had a guardian angel with him that day. That is what I wish for your daughter. Miracles do happen.

Cindy


04/10/2012 05:18 PM
luckyduck

Hi again Msatre,

The reason I mentioned RND is because it is treated differently than RSD in adults and since you are probably doing plenty of online research you may find more information doing an RND search that is helpful for your daughter.

The outlook for your daughter is very very good as long as she stays with the therapy.

I've read on some sites that it can take a few months to a few years, even as many as five but the physical therapies have a real high success rate so please don't loose faith. She should be ok based on the statistics. I would suggest to you to research all the best places that do RND therapy and find out who's program has high success rates if it's possible for you to afford it. At least find out what success rate the current therapy place has to give you piece of mind. I hope that helps. hugs, Lucky

ps. Here's a few sites and forums I found you might find interesting.

https://www.inspire.com/groups/rare-disease/discussion/rnd- symptoms/

https://www.inspire.com/groups/rare-disease/discussion/rnd- 4/

http://www.rsds.org/pdfsall/AMP_RNDparentHandout.pdf

http://www.chp.edu/CHP/reflex+neurovascular+dystrophy

http://www.amazingkids.org/childrensinstitute/userfiles/ file/1.5RNDParent%20Handout.pdf

Post edited by: luckyduck, at: 04/10/2012 05:19 PM

Post edited by: luckyduck, at: 04/10/2012 05:28 PM

Post edited by: luckyduck, at: 04/10/2012 05:29 PM


04/10/2012 08:54 PM
rsdcrpsfire
rsdcrpsfire  
Posts: 2023
VIP Member
I'm an Advocate

Dear msatre

Welcome to the family. Happy to have you with us.

My thoughts and prayers go out to you and your little girl. It breaks my heart to learn your daughter is going through so much pain and discomfort and such a very young age. I know how hard it must be for you as her mom not to be able to make it go away. We can't just put a bandaid on this and make it all better. Your love and support does make a tremendous amount of difference for her though.

I'll be praying that her therapy helps her, she's young, hopefully a remission is possible. Along with a good team of RSD/CRPS (RND) doctors to aggressively treat her.

Sending a hug to both of you,

~Twinkle

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