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Old 05-22-2011, 03:13 PM   #1
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Desperate mum....Help please.

My very active 12 year old sprained her ankle..no biggie really.
However it has resulted in severe pin like feeling in her foot, the foot is often very cold yet swollen. it has discoloured on the bottom, she is not able to walk un aided, so she is on crutches.
we went to the hospital on Friday and they x rayed her..no break.
They diagnosed her with reflex sympathetic dystrophy and sent me home to google it.

I am in utter shock!!!!

She has been training for the worlds team for Tae Kwon do, she has amazing goals in life, she skateboards and surfs like a pro.

Now what do I do????

I am her mum, I am scared.

We are fortunate by the sounds of some stories, as she has a diagnoses only 5 weeks into the pain.

What do I need to ask the specialist? What do need to push for? Are there any excellent outcomes?

Please help me to understand :-(

 
Old 05-22-2011, 09:50 PM   #2
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Re: Desperate mum....Help please.

Hey. Sorry to hear about your daughter. I'm pretty new to this also, and alot of good people on this site having been dealing with it longer than me. I know many will try to help as well they can. What I have learned in the 4 months I've been dealing with rsd, is that research is important. The more I learn, the more informed decisions I can make. That and the help and guidance from the people here. It is scary, but at least we are not alone. Read through the posts on rsd. They are full of information, advice, ideas. What works good for one person doesn't work as well for another. But at one time or another, many treatments, medications, ideas have been tried by one or more people here. If you have a question, post it. If it is over medication or treatments, ask. Odds are someone has been there and can at least give you helpful feedback based on their experience. And through it all they are there to listen. I have found you can whine, grump, complain, and even smile through these posts.
I'm a mother myself. I can barely grasp this stuff dealing with it myself. I know I would not want my boys to deal with it. Please feel free to contact me if you need someone to lend an ear. I check the boards often. As I said, I am new to this also, but what I know, I'll share, and I will always listen.

 
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Old 05-23-2011, 12:11 AM   #3
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Re: Desperate mum....Help please.

You need to see a specialist urgently. The correct treatment within 3 months of the start, not diagnosis can lead to long term remission.
These are big no no's and must be refused.
Use of Ice.
Hot and Cold water Contrast Therapy.
Aggressive Therapy, do not alow them to push her to the pain levels,, only gentle movements
No needles in the area under any circumstances.

Last edited by Kev629; 05-23-2011 at 12:12 AM.

 
Old 05-23-2011, 03:19 AM   #4
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Re: Desperate mum....Help please.

Agree with Kevscar - avoid the aggressive physio at all costs, but do the gentle stuff very very often. Also reduce the RSD adrenaline response in any way you can - calm relaxed home front, meditation, stroking pets actually seems to help, reading, advoidance of scary pushy medical professionals, reducing anxietyy by allowing your child control ovr decisions, etc etc

 
Old 05-23-2011, 05:11 AM   #5
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Re: Desperate mum....Help please.

Think positive and it will rub off on your daughter. Listen to the others who have responded. The fact that they have been able to give her a dx so soon is a good thing. Push for a specialist, but in the meantime what medication are they giving her? Elevating her foot should help with some of the swelling. My grandmother actually sewed me a bolster pillow that works and helps me to get more comfortable. Small, little movements that she can do WITHOUT causing pain will help to keep her muscles from getting stiff (gas pedal motion, spelling out the alphabet w/ her toes). Help her to let you know what makes her more comfortable, what she's more sensative to, ( I can't stand the cold), and crazy as it sounds wrapping the foot in an ace bandage actually will help keep the swelling down- at least that's what the PT has told me time and time again. If she has to have foot down, I'd wrap it I do everytime I have to be somewhere for long periods that I can't prop up my foot.

 
Old 05-23-2011, 11:13 AM   #6
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Re: Desperate mum....Help please.

Hi pip12, I have RSD also year and a half now. Children with RSD have a very good chance at recovery, You need to see a doctor who deals with RSD in children, the aggresive therapy for us adults is a big no no but, I have seen several sites online (google children RSD physical therapy) where they take young children and put them in aggresive physical therapy where they actual stay in the rehab center for weeks overnight. They have a very good outcome with these children returning to a normal life. I will look online again to see if I can find it and come back and give you more info.
I hate to hear children have to go through this.
Kelly

 
Old 05-23-2011, 11:32 AM   #7
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Re: Desperate mum....Help please.

Ok I found it I hope I can post this, just google dream online the pain puzzle and its about a childrens hospitol in boston I believe, It is very interesting.
I hope this helps
kelly

 
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Old 05-23-2011, 06:23 PM   #8
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Re: Desperate mum....Help please.

Thank you all so much for your help. We saw the specialist last night, he is reluctant to give her pain care as he says she hasnt had it long enoughg. i am seeing another one today, i want her to go to pain clinic for kids which has a very good track record. We are still pretty scared. I thinkk more scared at the moment that we arent going to get the treatment needed.

 
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Old 05-24-2011, 03:36 AM   #9
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Unhappy Re: Desperate mum....Help please.

Quote:
Originally Posted by Pip12 View Post
My very active 12 year old sprained her ankle..no biggie really.
However it has resulted in severe pin like feeling in her foot, the foot is often very cold yet swollen. it has discoloured on the bottom, she is not able to walk un aided, so she is on crutches.
we went to the hospital on Friday and they x rayed her..no break.
They diagnosed her with reflex sympathetic dystrophy and sent me home to google it.

I am in utter shock!!!!

She has been training for the worlds team for Tae Kwon do, she has amazing goals in life, she skateboards and surfs like a pro.

Now what do I do????

I am her mum, I am scared.

We are fortunate by the sounds of some stories, as she has a diagnoses only 5 weeks into the pain.

What do I need to ask the specialist? What do need to push for? Are there any excellent outcomes?

Please help me to understand :-(
hi my name is diane and i rsd i know what you are talking about , there is a good doc in phila pa dr schwartzman and he does treatments for rsd but there is a two yr waiting list i cant walk for 9 mts but on top of the rsd i also have a venous malformation all in my lt leg and foot

 
Old 05-24-2011, 08:57 AM   #10
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Re: Desperate mum....Help please.

Pip, what kind of specialist is he that he doesn't want to address her pain b/c she hasn't had it long enough? Surely your daughter is taking something for pain? Pain is the right there at the very top of the list of symptoms for diagnosising RSD. The more information you have, the better you are able to advocate for your daughter. Do not be scared to question these doctors, specialists or not. You are her only mother. Let them answer to you. Not the other way around. They are not with her when she hurts the worst. Make sure that they are doing all that they can for her. Don't leave an appointment until you understand everything. Take a notebook. Write it down. Why again can't she have pain treatment? The med __________ doesn't seem to help as much. Is there anything else? Questions like that help. Anything you can do. Will help her. Be strong for her. I'm sure you are already.

 
Old 05-25-2011, 06:16 PM   #11
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Re: Desperate mum....Help please.

I am tyring to be strong for her...she is stronger than me. I hate playing the waiting game. one says it a good outcome, another says it will spread, another says he hasnt had it last long in kids another says its irreversable...blblblbllah.
I dont know what to think anymore...
They have given us a referrel to a kids pain clinic that deals with this stuff, i dont know how long it will take..wait wait wait.....
everyday that goes past my heart drops a little more.
One day she is doing Tak Kwon do, getting ready for her black belt grading, ready to trial for worlds, the next day we are in a fight to....i dont know what? save her leg/? save her from a wheel chair? save her from intense pain for the rest of her life?

I wnat to be angry but I am too sad to be angry, i wnat torucsh her to every specialist in the country, I want the miracle, I really want her back.

 
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Old 06-04-2011, 07:16 PM   #12
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Re: Desperate mum....Help please.

Hi My name is diane and i am new at this to !! i have rsd since i fell at work last yr it has been so painful i dont know which way to turn i have been to so many orthpedics and john hopkins which is a big hospital in balitmore pa it i have been admitted to the hospital a few times for the pain and then the one med they had me one gave me a seziure i have tryed the lyica , neuroton ect right now i am morphine like drug i just went to er again last night for a pain shot well it lasts for a day and right back in pain again if anyone can give me ideas please help my life has turned upside down i just want my life back , Diane

 
Old 06-04-2011, 09:39 PM   #13
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Re: Desperate mum....Help please.

I go in on 16th for a spinal nerveblock. I have heard good thing about them, though this will be my first. I got a local one in my foot on 16th of last month, it did seem to help some with the pain, but now is wearing off. Have they tried any nerve blocks on you? I have heard others talk about tens units(not really sure what it is, still need to research it) and other treatments. Start a new thread and ask for ideas. New ones seem to be read more than longer threads.

 
Old 06-05-2011, 07:13 AM   #14
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Re: Desperate mum....Help please.

Hi, i have had a spinal block done it lasted for 3 hrs then i was just hospitalized just two wks ago they put a cather in my leg and numbed the leg it did work for 3 days which was nice then they had to take it out and the pain was right back the tens unit is like a unit that vibrates they tryed that at the very begininng but she said no more b/c it was painful i am only 36 yrs old and i just cant seem to think this is all fair last night i felt like i couldnt breath my pain med relax s the breathing muscles finally i fell a sleep sitting up why cant they come up with a cure they have all kinds of new stuff and no one can help with this i just dont understand i am so depressed i just feel like the only way to deal with this is not to deal with it anymore i am so sorry to dump this all on you it just sucks and i can imange you feel some of this to

 
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Old 06-05-2011, 07:23 AM   #15
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Re: Desperate mum....Help please.

At least you are doing research in the US. Here in the UK the Dept of Health and the NHS have never given a single penny for research and 95% of the medical profession have never heard of it.

 
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