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
Quote:
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
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