[gitte74]

Hi everyone

Iīm so glad to have found this forum, I havenīt been able to find anything on the danish sites. Anyway it makes me sad to read all your stories .

Itīs actually my son who is suffering the RSD. The short story: Over a year ago after playing badminton, Oliver symptoms started in the right foot spreading to belov the knee, not beeing able to stand on the leg, having to use cruthes. After 3-4 months, a physical therapist, who was trying desperatly to relieve his pain, did something to his back (not normally painfull) and had him doing some ”bend-back” exercises every hour. Later that evening I had to take Oliver to the ER because of servere backpain. A week later he was admitted to the hospital and was diagnosed RSD in the leg and send to a Psyciatrist because of his back because the scan said nothing and he was able to move relative freely when lying in the bed (I have chronic backpain and I can do that too). Because of the back pain he is having trouble sitting, standing, walking, activity more than a shorter period.
Olivers leg has gotten better on Lyrica and PT, actually also the back a bit. In June the Lyrica is decreased from 200 mg daily to 150 mg daily, but since then his back has been worse again.
The psyciatrist canīt seem to find a reason why the back should be a psycological problem, they think of him as a normal boy in pain. Another PT that we have seen, thinks that the back pain is for sure related to the RSD, he also discovered a sensitivity in his sculp, wich he also is having on his back, not quite like the leg was at first, but itīs there. There is nothing else to see on his back (I think).

Iīd like to hear your opinion and maybe some advice. Is it possible the back pain is all in his head?? We as parents are having a hard time beliving it, not because itīs in life impossible but more that we know our boy and he is normally a happy wellfunktional boy.
Is it possible to have a ”lighter” version of RSD, without all of the symptoms ,the doctor said that his leg was one of the milder cases. I know that children can have more mild RSD and there is a lot of differnt pain feeling but is there a difference in the intensity of the pain.
I have also read about RSD patient could have up to 20 times decreased ”normal” painfeeling what is your experience?
Oliver had, a year before this, an episode with the left foot painfull and swollen for 3-4 week with no diagnose despite of blodwork and X-ray, could this have anything to do with this??

Maybe this is to much to ask and I know that you can not tell me anything for sure but we are desperate parents not being able to help our son and it is affecting him very much also psykological not being in school for such a long time and not being able to do like his friend, also not knowing anything for sure.

I hope you can understand my writing, grammar and spelling itīs a long time since I have written in english (and it took me a very long time)

the best wishes
Olivers mum

[Hockey]

Welcome to NT!

I'm sorry to read about your situation: no parent should have to watch a child suffer.

The link to our RSD forum is
http://neurotalk.psychcentral.com/forum21.html

I do not know enough about RSD to offer any advice. Fortunately, there are many people here who will be able to help you.

In addition, to information about your son's specific condition, NT has much to offer Oliver and you.

While we have a variety of afflictions, everyone here understands the emotional toll any serious illness can take. We offer support to both patients and caregivers.

To combat the isolation of illness, we have subgroups for everything from gardeners to aspiring authors.

Feel free to roam the board. If you need help, just ask.

Cheers
p.s. Your English is better than mine and it's supposed to be my native tongue!

[SandyS]

Hi Oliver's mum,

I too am a mom of a teenager with RSD. Oliver's pain is real. I believe that his back pain is RSD. My daughter started with a sprained ankle, and now she has all over body RSD. She is 16 years old and has been suffering for many years. The only pain relief for her has been Ketamine Infusions. She had them back in July. She is going to have a Booster next week. I understand where you are right now. What ever you do, NEVER give up. Always fight for Oliver. He needs you. There are many Childrens Pain Rehabilitation programs here in America, you should see about one for your son where you live. Try to keep your son socializing. I know how difficult it can be when they are not in school. How old is your son? I hope this helps some. Good luck to you and hopefully Oliver will get pain relief.
Remember you are his only advocate, you will pave his future, always believe him.

Sandy

Originally Posted by gitte74

Hi everyone

Iīm so glad to have found this forum, I havenīt been able to find anything on the danish sites. Anyway it makes me sad to read all your stories .

Itīs actually my son who is suffering the RSD. The short story: Over a year ago after playing badminton, Oliver symptoms started in the right foot spreading to belov the knee, not beeing able to stand on the leg, having to use cruthes. After 3-4 months, a physical therapist, who was trying desperatly to relieve his pain, did something to his back (not normally painfull) and had him doing some ”bend-back” exercises every hour. Later that evening I had to take Oliver to the ER because of servere backpain. A week later he was admitted to the hospital and was diagnosed RSD in the leg and send to a Psyciatrist because of his back because the scan said nothing and he was able to move relative freely when lying in the bed (I have chronic backpain and I can do that too). Because of the back pain he is having trouble sitting, standing, walking, activity more than a shorter period.
Olivers leg has gotten better on Lyrica and PT, actually also the back a bit. In June the Lyrica is decreased from 200 mg daily to 150 mg daily, but since then his back has been worse again.
The psyciatrist canīt seem to find a reason why the back should be a psycological problem, they think of him as a normal boy in pain. Another PT that we have seen, thinks that the back pain is for sure related to the RSD, he also discovered a sensitivity in his sculp, wich he also is having on his back, not quite like the leg was at first, but itīs there. There is nothing else to see on his back (I think).

Iīd like to hear your opinion and maybe some advice. Is it possible the back pain is all in his head?? We as parents are having a hard time beliving it, not because itīs in life impossible but more that we know our boy and he is normally a happy wellfunktional boy.
Is it possible to have a ”lighter” version of RSD, without all of the symptoms ,the doctor said that his leg was one of the milder cases. I know that children can have more mild RSD and there is a lot of differnt pain feeling but is there a difference in the intensity of the pain.
I have also read about RSD patient could have up to 20 times decreased ”normal” painfeeling what is your experience?
Oliver had, a year before this, an episode with the left foot painfull and swollen for 3-4 week with no diagnose despite of blodwork and X-ray, could this have anything to do with this??

Maybe this is to much to ask and I know that you can not tell me anything for sure but we are desperate parents not being able to help our son and it is affecting him very much also psykological not being in school for such a long time and not being able to do like his friend, also not knowing anything for sure.

I hope you can understand my writing, grammar and spelling itīs a long time since I have written in english (and it took me a very long time)

the best wishes
Olivers mum

[loretta]

Originally Posted by gitte74

Hi everyone

Iīm so glad to have found this forum, I havenīt been able to find anything on the danish sites. Anyway it makes me sad to read all your stories .

Itīs actually my son who is suffering the RSD. The short story: Over a year ago after playing badminton, Oliver symptoms started in the right foot spreading to belov the knee, not beeing able to stand on the leg, having to use cruthes. After 3-4 months, a physical therapist, who was trying desperatly to relieve his pain, did something to his back (not normally painfull) and had him doing some ”bend-back” exercises every hour. Later that evening I had to take Oliver to the ER because of servere backpain. A week later he was admitted to the hospital and was diagnosed RSD in the leg and send to a Psyciatrist because of his back because the scan said nothing and he was able to move relative freely when lying in the bed (I have chronic backpain and I can do that too). Because of the back pain he is having trouble sitting, standing, walking, activity more than a shorter period.
Olivers leg has gotten better on Lyrica and PT, actually also the back a bit. In June the Lyrica is decreased from 200 mg daily to 150 mg daily, but since then his back has been worse again.
The psyciatrist canīt seem to find a reason why the back should be a psycological problem, they think of him as a normal boy in pain. Another PT that we have seen, thinks that the back pain is for sure related to the RSD, he also discovered a sensitivity in his sculp, wich he also is having on his back, not quite like the leg was at first, but itīs there. There is nothing else to see on his back (I think).

Iīd like to hear your opinion and maybe some advice. Is it possible the back pain is all in his head?? We as parents are having a hard time beliving it, not because itīs in life impossible but more that we know our boy and he is normally a happy wellfunktional boy.
Is it possible to have a ”lighter” version of RSD, without all of the symptoms ,the doctor said that his leg was one of the milder cases. I know that children can have more mild RSD and there is a lot of differnt pain feeling but is there a difference in the intensity of the pain.
I have also read about RSD patient could have up to 20 times decreased ”normal” painfeeling what is your experience?
Oliver had, a year before this, an episode with the left foot painfull and swollen for 3-4 week with no diagnose despite of blodwork and X-ray, could this have anything to do with this??

Maybe this is to much to ask and I know that you can not tell me anything for sure but we are desperate parents not being able to help our son and it is affecting him very much also psykological not being in school for such a long time and not being able to do like his friend, also not knowing anything for sure.

I hope you can understand my writing, grammar and spelling itīs a long time since I have written in english (and it took me a very long time)

the best wishes
Olivers mum

Hi Olivers Mum and welcome to Neurotalk,
RSD is truly a very difficult disorder to have or for family members and friends to watch a loved one suffer from this disorder. I would encourage you to research as much as you can to learn about the disorder. It is not unusual for RSD to spread from original site to other parts of the body. I went from frozen shoulder to full body RSD and also have it internally. There is a informative site: rsdrx Dr. Hooshmand is now retired, but left his website up. Under puzzles list: is 146 questions from RSD patients and his answers. It's very good. Also the national organization for RSD is RSDSA- it also is very informative. Read read read on this site. RSD affects the Limbic part of the brain, causing depression, short term memory loss, a grasping for words while talking. forgetting what we want to say. I am 62, married and have a daughter-age 30 and son in law, they are very supportive and it means soo much to me. RSD is an autonomic disorder , which means it affects our organs that are involuntary. Like blood pressure, circulation, body temperature both hot and cold. Sweating is common among us. skin rashes , itching, Ice is not recommended. Desensitization is important. Physical therapy needs to be done by someone who is skilled to not overdue or injure the patient. Densensitization is where we get our limbs used to different fabrics, textures.
Does your son use a computer.? There are other young people on here with RSD that could be a great encouragement for your son. He won't be so isolated.
RSD is rated 42 on the McGill Pain Index of 1-50. It's above amputation, and terminal cancer. Ask as many questions as you want, this is a very kind, compassionate group of people. Take care, and give Oliver a soft hugs from us, loretta

[Mslday]

Dear Oliver's mom,


I'm so sorry your son is experiencing this difficult and complicated condition. My heart goes out to you all.

It is not in his head but it is most likely that the brain plasticity is altered by constant pain signals being sent to his brain and it is that that changes the chemical reactions and signals that are then sent to various other parts parts of his body.

Has your son had any nerve blocks, epidurals, continuous peridural blocks to help his RSD?

I can highly recommend a Klinc in Schleswig Germany, they take many patients from Denmark and from what I was told it is often covered under your medicare system. They understand how to treat RSD patients there and I can give you the contact names and numbers of the doctors. I went there on my own dime just over a year ago from Canada and they helped me get through a surgery that was necessary on my RSD foot. They gave me a week long continuous peridural anesthetic that helped prevent further spread of the RSD following my surgery.

It is considered a gold standard treatment for RSD patients early in the disease process. Perhaps they can help you. Please feel free to send me a private message, I don't speak Danish or very much German but the staff and doctors in the Schleswig hospital spoke more Danish than they do English. I learned "alles klar" there from my favorite nurse.

MsL

[fmichael]

Dear Oliver's mom -

As the father of two boys (16 and 12) I cannot begin to imagine how hard this must be on you. Challenging enough to be an adult like myself who simply has to accept it in his own life. In my opinion, the parents of children with RSD/CRPS have the hardest job of all: taking in all of this terrifying information and navigating what must seem like barely charted waters, while at the same time serving as a source of strength and reassurance to you child. You, all of you, are the unsung heroes of this story.

MsL has given you a particularly good reference, with her Klinc in Schleswig Germany. I would follow up with her as soon as possible. (To send a private message, you must be logged in; perhaps the easiest way to do it is to simply left-click on the author's name - in blue - the left side of the post, which opens a drop-down menu that includes "Send a private message to ______.")

There are many myths and assumptions regarding RSD/CRPS in children. An excellent source of information is the webpage of the Reflex Sympathetic Dystrophy Association of America (RSDSA) http://www.rsds.org/index2.html and in particular the "Children" section of its Medical Articles Archive page, which you can open here: http://www.rsds.org/2/library/articl....html#Children

Going through those article tonight, I was amazed by one published by researchers at the Karolinska University Hospital in Stockholm, which it was reported, in study/case-report of seven adolescent girls with severe RSD, that 5 were actually cured by the implantation of spinal cord stimulators, and the other two, while not cured had a "substantial" improvement in pain, all of these observations having been made 4 - 6 years after the initiation of treatment. Compared to the record in adults, this is an outstanding result! The article is "Spinal cord stimulation in adolescents with complex regional pain syndrome type I (CRPS-I)," Olsson GL, Meyerson BA, Linderoth B, Euro J. Pain 2008;12:53-59, which can be directly opened through the RSDSA website at http://www.rsds.org/2/library/articl..._Linderoth.pdf While noting that this was a small "uncontrolled" study, the authors state the miraculous, almost in passing:

Many studies have demonstrated that in adults, SCS may effectively relieve CRPS-I though there is only one single randomised controlled trial (Kemler et al., 2004; reviews, see Grabow et al., 2003; Turner et al., 2004; Taylor et al., 2006). No curative effect of SCS has been reported. To the best of our knowledge, the application of SCS for this condition in children and adolescents has not been previously reported.

So that may be an option to consider, hopefully when you meet with the doctors at the Klinc in Schleswig. And if not there, then perhaps the Karolinska University Hospital [Pain Treatment Unit, Astrid Lindgren Children's Hospital, 17176, Stockholm, Sweden].

Good luck. And please come to us with any questions and let us know how your son is doing.

Mike

[SandyS]

Hi Mike,

Thanks for this it is a very informative site.
Sandy

[loretta]

Originally Posted by gitte74

Hi everyone

Iīm so glad to have found this forum, I havenīt been able to find anything on the danish sites. Anyway it makes me sad to read all your stories .

Itīs actually my son who is suffering the RSD. The short story: Over a year ago after playing badminton, Oliver symptoms started in the right foot spreading to belov the knee, not beeing able to stand on the leg, having to use cruthes. After 3-4 months, a physical therapist, who was trying desperatly to relieve his pain, did something to his back (not normally painfull) and had him doing some ”bend-back” exercises every hour. Later that evening I had to take Oliver to the ER because of servere backpain. A week later he was admitted to the hospital and was diagnosed RSD in the leg and send to a Psyciatrist because of his back because the scan said nothing and he was able to move relative freely when lying in the bed (I have chronic backpain and I can do that too). Because of the back pain he is having trouble sitting, standing, walking, activity more than a shorter period.
Olivers leg has gotten better on Lyrica and PT, actually also the back a bit. In June the Lyrica is decreased from 200 mg daily to 150 mg daily, but since then his back has been worse again.
The psyciatrist canīt seem to find a reason why the back should be a psycological problem, they think of him as a normal boy in pain. Another PT that we have seen, thinks that the back pain is for sure related to the RSD, he also discovered a sensitivity in his sculp, wich he also is having on his back, not quite like the leg was at first, but itīs there. There is nothing else to see on his back (I think).

Iīd like to hear your opinion and maybe some advice. Is it possible the back pain is all in his head?? We as parents are having a hard time beliving it, not because itīs in life impossible but more that we know our boy and he is normally a happy wellfunktional boy.
Is it possible to have a ”lighter” version of RSD, without all of the symptoms ,the doctor said that his leg was one of the milder cases. I know that children can have more mild RSD and there is a lot of differnt pain feeling but is there a difference in the intensity of the pain.
I have also read about RSD patient could have up to 20 times decreased ”normal” painfeeling what is your experience?
Oliver had, a year before this, an episode with the left foot painfull and swollen for 3-4 week with no diagnose despite of blodwork and X-ray, could this have anything to do with this??

Maybe this is to much to ask and I know that you can not tell me anything for sure but we are desperate parents not being able to help our son and it is affecting him very much also psykological not being in school for such a long time and not being able to do like his friend, also not knowing anything for sure.

I hope you can understand my writing, grammar and spelling itīs a long time since I have written in english (and it took me a very long time)

the best wishes
Olivers mum

Hi Oliver's Mum,
I just wanted to add some information I personally experience. Many of us have skin issues with RSD. I have small red dots on my body and in my scalp. At times, they itch. I also have lower back pain, that at times is higher level than other parts of my body. I have full body RSD. I have been seeing a psychiatrist for 5 years. I attribute my acceptance of this disorder and skills to deal with it, to his skills. He is also a neurologist and pharmacologist. He has adjusted my meds where I'm in better physical and mental health today than I was 3-4 years ago.
Please keep in touch. Your English was very understandable! I can appreciate you spent considerable time forming your e-letter. Please give Oliver a hug from us, loretta

[gitte74]

Hi again everyone

Wow...Iīm truely overwhelmed by the response to my letter, itīs a new feeling to be understood in all this. Thank you all for giving all of your information and sharing your stories, I have been reading a lot. Its not because I dont appreciate since the long time since, but its takes me quite a while to write this. It might get shorter and easyer in time!
By the way, Oliver is just turned 13. At the moment he is not interested in talking with others on the net like this, mayby he will change his mind in time. Sad, because he is a lot alone and with his mother, because he is not in scool!! (not the way it is supossed to be)

I have been researching myself, quite a lot, i think, and I have also found the swedish hospital and I can see that it seams to be a highly recomended hospital when it comes to RSD in children. I have looked at the possibilities in the medcare system and itīs not an option to be covered in another country at the moment, Iīm affraid. We can go to a bigger hospital but it requires a reference from a doctor but there is a waiting time and we have to start all over. Oliver was admitted for 7 weeks to begin with and it was very hard for him and to the whole family (Oliver has got a 8 year old sister). What I want the most, is Oliver to be seen by the pain management doctor and I know there are quite good ones at the hospital, where we are seeing the ped.neuro.doc., but the ped. Doc. is the one to make the reference (the right word??) to the pain specialist we cant just go see him on our own. I think maybe you can? The ped. Doc. Is the one who diagnosed RSD in Olivers leg but thinks that the back pain is all in his head, I don,t think that he is in the believe that you can have RSD in the back. At the moment we are trying to work with the psycoligist, together trying to get the ped.neur.doc. To reconcider his oppinion to get the reference, but again it is weeks ago I last heard from them again itīs so frustraiting to have to keep on calling and calling with no result. The time goes by and itīs not getting easyer. This is why I try to get all the information that I need too convice the doctor. I have been writing a very long letter to the doctor, wich I hope will have some effect.
Oliver has not gotten any other treatment than Lyrica and then physical therapy and it was hard to watch to begin with because at first he was in so much pain using his leg and he was crying in pain just putting his foot down, but I am sure you all can know how he has been feeling.
By the way we have nottised Oliver several times complaining of dizzines when standing up too quickly. He is allways complaining about feeling hot, he is never cold. I have been taking his temperature a couple of times when its the worse and his cheeks looks like they are burning and he has been running a fever at almost 38 C (dont know in F) with no other symptoms (like flu and other stuff) With that temperature you will normally feel quite sick, but not Oliver, he is just felling hot. Does any of you have theese symptoms. Is it a nervesystemdysfunktion and if it is why does it show up now?? I know that the Lyrica can make you feel hot, but actually make your temperature to rise??
Thank you so much all for taking your time with this.

Gitte – Olivers mum

[AintSoBad]

Hello Gitte,
I've had rsd for 26 years, and between that and many others here, I think we'd raise quite an argument with your pediatric neurologist about rsd not being able to strike in the back, or spine!
It is where mine started and spread from.

NEVER let a doctor tell you or Oliver, that his pain is in his head!
A Psychiatrist is an excellent idea!

For side effects of meds, and especially on a child, you'd need to check the internet. (Keep in mind, side effects can be different for children).

My temp. is usually a degree cooler than normal, but, I feel hot.

I know I haven't answered all your questions, but there are others who will help.

Another thing about calling the doctor, explain to the call taker, you've been calling, and ask to make a phone appointment, for the beginning, or, end of the day (for example).

Keep your faith, and Be well! Send our Faith to Oliver!

Pete