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    Old 07-10-2009, 07:57 AM   #1
    familyof5
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    Newly diagnosed with RSD

    Hi everyone.

    I live in the UK. My son has recently been diagnosed with RSD. He's had a constant limp for 8 months now and despite blood tests, x rays, bone scans and an MRI scan, nothing was found.

    About 3 weeks ago we saw a rhumatologist who took one look at him and diagnosed RSD. Until then I'd never even heard of it.

    He's recently been in hospital and he's seen no end of specialists, pediatrcians and pain specialists. He needs a nerve pain blocker to deal with his pain, but because of his young age, doctors are limited in what they can give him.

    I took him back to the doctors recently and asked if there wasn't something he could have. Result was he was given Naproxen. Not only did it do no good, (it's an anti inflamatory) it's given him mouth ulcers.

    He is currently using crutches to get around because he cannot walk without them. We are being referred to another specialist soon at Great Ormond Street hospital in London.

    I have no idea what the future holds for my son. Can anyone offer me any advice please? I can't stand to see him in so much pain. If I could have his pain instead of him I would.

    Thank you.

     
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    Old 07-12-2009, 12:11 AM   #2
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    Re: Newly diagnosed with RSD

    Welcome! I'm so sorry your son has rsd. It's bad enough when us adults get and even worse when a child does.

    I'm not sure what advice to give you though. The way the docs treat kids is a lot different than adults. It's very sad that they would let a child suffer in agony rather than give them some kind of pain relief. Pain meds help to ease the pain a little for sure and of course aspirin, ibuprofen and such don't touch it.

    Sometimes meds like lyrica, neurontin and topomax help pain. They are drugs for nerve pain. They don't work for everyone. Physical therapy is very important. The saying, Use it or lose it is very true for us. The key is to not overdo it and make the pain worse. Slow pt is the best way and water pt is a fantastic way to keep moving without gravity dragging on the body.

    Never use ice on the part of the body with rsd. This causes the blood vessels to shrink even more and will also cause the pain to soar. Heat works well, like a hot bath, or heating pad.

    That's all I can think of right now. If you have any specific questions please ask away.

    Hugs,

    Karen

     
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    Old 07-12-2009, 03:16 AM   #3
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    Re: Newly diagnosed with RSD

    Thank you Karen for your reply.

    I gave him a nice warm bath yesterday. Trouble is the bathroom is of course upstairs and it really hurts him to walk up the stairs. Then of course he has awful trouble getting into the bath and sitting down. He has to keep his leg straight, he cannot bend it normally.

    When we saw another consultant a few weeks ago, he wanted to see exactly what he could and couldn't do, so that he knew how best to help him and so he could see how bad it was.

    When he tried to get him to sit crosslegged on the floor he just couldn't do it, and he burst into tears. I thought my heart would break.

    We are going to see a pain consultant on Thursday so hopefully he can give him something that he needs, which of course is a nerve pain blocker. If his pain could be controlled of course it would make his life a little easier. He cannot go to school at the moment because of this. Plus he will have to sit on a hard chair all day, and that is out of the question.

    I'll post back when I've seen the pain man. Thanks again for your reply Karen. I honestly appreciate it.

    Jane. xx

     
    Old 07-12-2009, 07:43 PM   #4
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    Re: Newly diagnosed with RSD

    I'll be waiting to hear back from you on what the pain guy said. You poor little man. My heart breaks for him.

    I have four children of my own. They're all grown-mostly grown. My baby is 15 yrs old now. I also just became a grandma last Monday. :-D

    I'll keep him in my thoughts!

    Hugs,

    Karen

     
    Old 07-12-2009, 07:44 PM   #5
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    Re: Newly diagnosed with RSD

    Hi Jane,
    My heart goes out to your son for having to endure the pain of RSD...and to you as a mother having to see the pain your son is in, and to feel helpless in trying to give him some relief....

    From my reading, I understand that RSD has a great chance of remission and relief in children, much more so than in adults..I would think because of the resiliency of young people's biological systems.

    If you go to ******* and do a search for "RSD - A Kid's Story Through Pain parts I and II, you will see a treatment center run by Dr. Sherry of the Children's Hospital of Philadelphia. It is a very encouraging story.. Perhaps you can call the center and get some guidance from Dr. Sherry and his staff..I am assuming Dr. Sherry is still with the center...
    You and your son are in my thoughts, and always try and be hopeful that things can and will get better.
    Many hugs,
    Tigerlily xo

     
    Old 07-13-2009, 06:38 PM   #6
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    Smile Re: Newly diagnosed with RSD

    Hi Guys,

    Karen,

    I just wanted to congratulate you on your new grandson. That's great! I hope everyone is well.

    Sharon

     
    Old 07-17-2009, 06:37 AM   #7
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    Re: Newly diagnosed with RSD

    Well we saw the doctor at the pain clinic yesterday and he prescribed amitriptyline, 1ml at nightime. Well tbh I know it's only been 24 hours but it hasn't made any difference at all. Whilst I obviously don't wish to dope my son up on medication, I feel that this dose isn't really high enough.

    So I have made an appointment to see our doctor next week to discuss this, because obviously I don't want to increase the doseage without consulting her first, that would be irresponsible of me.

    He is still in terrible pain and his spasms in his hip are becoming more frequent. He has to attend his first physio session on Monday so I'm hoping that wil help.

    I'll keep you updated.

    Jane.

    Last edited by familyof5; 07-17-2009 at 06:37 AM.

     
    Old 07-17-2009, 09:29 AM   #8
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    Re: Newly diagnosed with RSD

    Amitriptyline is an anti-depressant also used for chronic pain. It can take up to 4 weeks to have an effect. So I wouldn't expect anything in the first few days. Doctors also want to start on a low dose and titrate up. So it may take a few weeks. I know that with kids, physical therapy is a first line of treatment. Good luck to you. It is so hard to watch your child suffer. My son had migraine headaches in high school so bad that he could not go to school. It was so frustrating for all of us.
    Sunny

     
    Old 07-17-2009, 11:14 PM   #9
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    Re: Newly diagnosed with RSD

    Last night my son started complaining that his eyesight was blurred. So I've made an appointment with the doctor for next week to discuss it and I've stopped the amitryptilne for now. Do you think that was the right thing to do or should I carry on giving it to him?

    Also I've made another decision. I have beaten myself up over this so much but I think it's the right decision. I've decided to take my son out of school and home school him. At the moment he is crippled. Without his crutches he cannot walk at all. He is in constant pain 24 hours a day, and he frequently gets spasms in his hip.

    At school as you know, kids have to sit on those hard plastic chairs all day. He can't do that. I have read up on all of this so I know where I stand legally.

    I would love him to make a miraculous recovery over the 6 week summer break from school but I can't see it happening. I would love to be proved wrong. I just want my fit healthy 10 year old back.

     
    Old 07-18-2009, 10:22 AM   #10
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    Re: Newly diagnosed with RSD

    so sorry your son and you too have to go thru this at all. what i am wondering here is just what type of injury or anything that occured to him physically actually brought this on? was there ANYTHING at all that they have been able to actually link this onset to? for espescially a child, to spontaneuously get RSD or even an adult, without there just being a 'something'(a trigger or damage) that affected the sympathetic nervous system would be pretty rare. have they ever done an MRI on his full spine just to really see if there is something more behind this, just considering the hip involvement along with the spasticity issue?

    has anyone mentioned at least trying a sympathetic nerve block on him just to see if his pain goes down at all? as far as i am aware, this really is the only type of test that would even come close to just seeing if this is indeed a sympathetically maintained type of pain. it just would block all symp signals that set the pain and other symptoms off. whenever i have had one of these done for my knee RSD that just goes to my foot, i do feel alot of reduction in that huge deep burning. but since i do just have other structiural problems, those become more prominant and noticable with that burning being diminished. is the affected area either hotter than the norm or colder? this is kind of the vasomotor malfunctioning going on(among other things) that would also have to be there just for RSD to develop too.

    while no real test is always going to work the same on everyone who has it, this could really help in identifying at least some possible contributors to his symptoms. just what symptoms is he actually having, now and before?

    just knowing if he suffered some sort of accident(a particular fall even, years ago or more recently?) or even a hit to certain areas or any trauma would help. even certain congenital findings that would or could be present within that spinal column or even within the cord itself just could be responsible for what he is dealing with too. the one huge thing about anyones body is you just really have no real clue as to what may be going on inside it til you just get a much deeper inside look at particular areas. i personally have had sooo many little incidental findings upon scans that were done for other reasons that really turned out to be major issues, its just crazy. so obtaining a full contrasted MRI done on his spinal would either rule in something or just rule out that area for any involvement at all at this point. its just that SNS chain runs along the outside on both sides of our spinal columns(tho it actually starts within that spinal cord itself) so it is a bit vulnerable to being injured or affected by certain spinal issues we can just have(born with) or get from some type of back or neck injury along the way of life.

    just knowing his EXACT symptoms would really really help since some conditions can mimic RSD type symptoms too(espescially when spinal is involved). but his medical history or any 'events' he has had along the way are also important to know too. its just when certain types of damage or injury are present already, it would not take a whole lot to actually trigger RSD in someone.

    i really do hope that this is not actual RSD but something else that is creating those particular types of symptoms for him. but everything really does need some further testing done before any doc can really 'pronounce' someone definitively with RSD. an ortho or neurosurgeon is usually the one to come up with a RSD dx, at least much more often than most rheumys would(just not the norm with most thats all). did that rheumy do that really in depth comprehensive type of blood study on everything and anything that could produce inflammation in a person(mine was four pages long with what looked like about at least 100 different things tested)? this is what the rhuemy i was referred to by my ortho did just to rule out any other possible inflammatory type of conditions that would generate a ton of heat and very pronopunced types of swelling i had along with nasty burning stinging pain.

    this is just a dx that you need to be certain of before anything else gets done, ya know? i wish you both all the luck in the world here just getting everything else tested and ruled out. hopefully this is not what it is thought to be. there IS always hope there ya know? like i mentioned above,there just are many many different things that could be producing the symptoms that just need ruling out or in. please do keep us posted, Marcia
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    Old 07-18-2009, 11:40 PM   #11
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    Re: Newly diagnosed with RSD

    Just prior to all this happening, I remember asking my son if he'd fallen off his bike, or if someone had bashed into him whilst he was playing football. The answer was no. Back in the summer and I mean may/june time last year, he probably fell off of his bike at least once, but not immediately before this happened, which was in October.

    The doctors were going to give him preglabin, but decided against it because of his age. Apparantly it isn't licensed for anyone under the age of 18.

    I have read that RSD can be caused not only by a major trauma, but also by something as silly as stubbing your toe. In some cases the actuall cause may never be found.

    He has had an MRI scan on his pelvis and hips but not his spine. He has had numerous blood tests to check for infection and for juvenile arthritis and these were repeated recently and all were negative.

    If you saw him trying to walk without his crutches you'd be horrified. He's crippled. He simply cannot walk without them.

    I'm seeing the doc on Wednesday so I'll let you know what she says. She is very good and very caring.

    Thank you all for your concern and support and advice. I appreciate it so much.

    Jane.

     
    Old 07-20-2009, 06:13 AM   #12
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    Re: Newly diagnosed with RSD

    My son saw a physiotherapist today. She made him walk with just one of his crutches, to see how he got on. She was trying to explain to him about how the nerves are sending the wrong messages to his brain etc, and about how he has to take back control of his body. I understand what she's saying but I'm not sure he does. The result was that he ended up in tears because it bloody hurt. She kept telling him not to limp but he can't help it! She said that his body has got used to walking in this way and that he has to try and teach it not to limp. Again I understand what she means, but he's only 10, and he doesn't.

    We are going to try and start some swimming this week to see if that will help him. He has to go back and see her next week but I can tell you he isn't looking forward to it.

    Last edited by familyof5; 07-20-2009 at 06:20 AM.

     
    Old 07-21-2009, 06:38 AM   #13
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    Re: Newly diagnosed with RSD

    before she decides simply to "tell" him NOT to limp, she(or one his other docs,even his GP can refer him for the MRI) NEEDS to truely find out just what the heck is actually causing it, you know what i mean? i still don't quite understand how they could come up with a dx of RSD without ever even bothering to just fully look at his entire spinal with an MRI to rule out other causes. other posssibles, espescially at his young age could be much more responsible for what you are describing symptoms wise so far as just a pronounced 'limp'?

    it sounds like you have done at least some research on RSD? what other actual possible RSD related symptoms does he have? right now i would really be pushing his docs for that full spinal contrasted MRI(just highlights things better than without it). once you actually see what it or is not going on in there,THEN it would be at least ruled out as a possible generator of his symptoms. if he is experiencing ANY level of real spasticity here, that MRI is even more important to try and rule out possible spinal involement which could be even at the cord level too.

    you just really do NEED to know what is generating his symptoms at the base level. tho it is always a possibility that this is indeed RSD, other possibles are just much more likely that just need ruling out. the one thing that is also very possible here is that he could have been born with some level of possible congenital malfornation within that spinal area too, i was. it would indeed take that MRI just to see what could possbily be there. this can also occur within the brain as well. these two key areas could be generating alot of possible symptoms if something decided to pop in while he was being formed in utero. i ended up with a tiny glob of blood vessels growing with my spinal cord that i never knew even existed til i herniated a disc in my c spine and it was found on the MRI(i was about 40 years old). this is why this MRI just needs to be done soon. just to see if everything within that area is simply okay.

    i do hope they can find the appropriate dx and the right types of treatments too. but just make certain that they are just looking at everything that could create those symptoms he is having first. you just really want the appropriate Dx in ordert to obtain the best possible treatments. please keep us posted, good luck, marcia
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    Old 07-21-2009, 11:06 PM   #14
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    Re: Newly diagnosed with RSD

    Quote:
    Originally Posted by feelbad View Post
    before she decides simply to "tell" him NOT to limp, she(or one his other docs,even his GP can refer him for the MRI) NEEDS to truely find out just what the heck is actually causing it, you know what i mean? i still don't quite understand how they could come up with a dx of RSD without ever even bothering to just fully look at his entire spinal with an MRI to rule out other causes. other posssibles, espescially at his young age could be much more responsible for what you are describing symptoms wise so far as just a pronounced 'limp'?

    it sounds like you have done at least some research on RSD? what other actual possible RSD related symptoms does he have? right now i would really be pushing his docs for that full spinal contrasted MRI(just highlights things better than without it). once you actually see what it or is not going on in there,THEN it would be at least ruled out as a possible generator of his symptoms. if he is experiencing ANY level of real spasticity here, that MRI is even more important to try and rule out possible spinal involement which could be even at the cord level too.

    you just really do NEED to know what is generating his symptoms at the base level. tho it is always a possibility that this is indeed RSD, other possibles are just much more likely that just need ruling out. the one thing that is also very possible here is that he could have been born with some level of possible congenital malfornation within that spinal area too, i was. it would indeed take that MRI just to see what could possbily be there. this can also occur within the brain as well. these two key areas could be generating alot of possible symptoms if something decided to pop in while he was being formed in utero. i ended up with a tiny glob of blood vessels growing with my spinal cord that i never knew even existed til i herniated a disc in my c spine and it was found on the MRI(i was about 40 years old). this is why this MRI just needs to be done soon. just to see if everything within that area is simply okay.

    i do hope they can find the appropriate dx and the right types of treatments too. but just make certain that they are just looking at everything that could create those symptoms he is having first. you just really want the appropriate Dx in ordert to obtain the best possible treatments. please keep us posted, good luck, marcia
    Well the only symptom of RSD he has is the limp, nothing else. He didn't have any major trauma just prior to the limp starting. He just seemed to wake up one day with it.

    He had an MRI scan but on his hips and pelvis. No one mentioned his spine, although someond did say that if he continues to walk this way, his spine will end up curved.

    I have tried to do what the physio said and get him to walk with one crutch but it's just so painfull for him, and since he saw her, he seems to be getting more spasms and they are getting more painfull. He really shouts when it happens.

    I'm seeing the doctor again today, she's a great doctor and I'll mention a spine scan to her and see what she says.

    This rhumatologist we saw was the one who diagnosed RSD. He was convinced that is what it is. Who am I to disagree? I'm just so grateful to have a diagnosis after all this time of wondering what is wrong with my son.

    I will update you all later on when I have seen the doctor. Thanks again to all of you for your support and advice. It really means a lot to me. Cheers.

    Jane.

     
    Old 07-24-2009, 07:41 AM   #15
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    Re: Newly diagnosed with RSD

    believe me,while i can understand that basic "need' to finally get a real Dx of anything that is affecting our children, getting the wrong dx can in some cases be ten times worse. if this 'label' sticks they will never start looking for the REAL and underlying cause. basing a very complex and invloved Dx of RSD without ANY actual symptoms of it(a limp really would not be considered, just in and of itself, to be an actual symptom per se either)is just sooo insane to me that any real 'specialist" could even go there at all with this. if you have read about this, you also know that there simply ARE real actual symptoms present too that would even start a doc to even think this could even be RSD at all.

    when it comes to any child suddenly presenting with a profound limp, there are just hundreds of real possible reasons for it to even occur that have to be ruled out with testing before you can truley Dx its origin. i am hjust wondering about the spasms you mentioned? does he have actual spasticity in those legs or 'just' spasming from time to time. if he has ever mentioned that his legs feel "tight" like a rubberband type feeling(ask him that) then this would lead morre towards actual spasticity which in most cases is from some upper spinal issue. it is just how the legs react when the spinal is incvolved at all at the cord level.

    did you happen to notice just what his lower legs did when they did the neuro assessment on him where they take that little hammer and tap in under the knee cap area? if they merely did a slower bounce then it is not a spastic issue. but if he had what are called 'brisk' quickened or 'exagerated" type of movements then, it would be hyperreflexic and spinal related. if you do not recall this at all, you can try this yourself at home just using the heavy end of a butter knife? hold the blade end in your hand while just using that heavier end to lightly 'tap' that area right below the knee cap and just see how that reflex responds and let me know.

    he just really truely NEEDS to have that MRI done and quite frankly it should actually be done with contrast from the brain on down thru his lumbar area just to REALLY see that area for what could be many many possible reasons for his one ad only true symptom. i honestly just cannot understand the thinking of this dr at all. this does not even make any real 'common sense" either ya know? if you yourself simply KNOW based upon what you have already read about symptoms that can be there and should be there and YOU just do NOT see them yourself, well, chances are pretty darn high that he simply does not actually have RSD at all. you just have to really look at the facts and be realistic about the potential for what a very wrong Dx made by a doc who i truley don;t think actually understands RSD at all himself labeled him with.

    it took my neurosurgeon and my ortho like two entire months going back and forth based upon alot of different very obvious types of symptoms i had to finally agree that what i had going on in my extremely hot and swollen knee was indeed RSD. they already knew i had the sympathetic nervous system damage, and the vasomotor malfunction going on, then they removed all other possible generators for my symptoms by basic testing. that was when my real solid dx was made, after EVERYTHING else that could have possibly have been causing all my symptoms were just ruled out of the picture.

    this just IS exactly what should be going on with your son right now hon, ALOT of testing and ruling out. its pretty basic stuff that has never actually explored potential areas that could simply be causing a profound limp in a child with no history of trauma. and one of the most common is some level of real congenital probem/defect/malformation going on that he was simply born with and it has now decided to show itself.

    i just really do feel for you in all this. you are advocating for your son right now and that IS the best possible thing we can do for our children when we just KNOW something is not right in them. i had to go thru this crap when my youngest suddenly presented in liver failure and then had to have a transplant. i would just push like heck right now just to make darn certain that every possibility for this limp is completely ruled out with appropriate types of testing being done. these docs simply owe your child this much, ya know? that is what their actual JOB is.

    please keep me posted on how things are going hon. i really just want to see him get the 'right' Dx, and not living with the wrong one while something else is going on and not being treated or fixed. just do whatever you feel you have to with these docs to make the right things happen. do not allow them to intimidate you either. believe me, many 'medical professionals' can make some whoppin mistakes since they are only mere humans like we are. take care jane, Marcia
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