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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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02-19-2010, 08:42 PM | #1 | ||
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I say the same exact thing...as you..It has to be me that is sick not my kids, husband or anyone I know or will know or will never know.. it has to be me if anyone.... I dare say you have a twin!!! Hugz, k |
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02-20-2010, 08:54 AM | #2 | ||
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Sorry to get off subject. I once called my insurance company for recommendations for my wife, who has RSD, and they told me 3 times they never heard of RSD or CRPS. And that was through a major carrier in which we dumped. That was 3 years ago.
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"Thanks for this!" says: | SandyS (02-20-2010) |
02-20-2010, 08:36 PM | #3 | ||
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02-21-2010, 12:21 AM | #4 | |||
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Well, things haven't change much. She is stiff in a bad bad flare up. It was her doc from Dallas children's medical center pain management clinic who called this local doc and they denied her anyway! Her Dallas doc doesn't know anyone else here in OK so it will be a stab in the dark for any of us if we can find anyone who sees children. I have been called hospitals and clinic telling them our story and I get the same thing "we don't treat children". I finally called OU medical center children's hospital. The do not have a pain management clinic on their site but it turns out they are in the process of starting one. They said they would see her pending her paperwork from her previous doctor. That is awesome! I hope it sticks!! So, we'll see. The problem is she is in so much pain and they can't see her until mid march! We may have to take her back down to Dallas anyway just to get her some immediate help. Poor baby!
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02-21-2010, 08:42 AM | #5 | ||
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That is promising news! I hope it sticks. Good luck. And, please let me know if you need any help when/if you go back to Dallas (or Ok City).
Quick question...did your daughter, by chance, receive an ultram infusion the last time she went to Dallas? That put me in a terrible flare for weeks. Plus, the weather in Texas/Oklahoma has been really unstable lately. I'm so sorry. |
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02-21-2010, 09:13 AM | #6 | ||
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That sounds very promising. I hope it all works out for your daughter. Gabbycakes |
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02-21-2010, 11:20 AM | #7 | ||
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Hi. I am sorry she is still in so much pain. I did not think that you could travel. If so I know a teen who went to Rush in Chicago and also Cleveland Clinic. I have also went to Cleveland Clinic and did not have the best results but this teen seems to be doing better. Another thought there is I think on RSDSA site or one of them support groups in all the states. Anyhow I would look under OK and even if it is not in your area maybe call the leader and see if she has any referals of good docs. I did that in MI. I really think referals from patients who are in similar can be a good source
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"Thanks for this!" says: | loretta (02-21-2010) |
02-23-2010, 09:07 AM | #8 | ||
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My sympathy and prayers are with you and your daughter in dealing with this monster. I, too, have a 13-year old son with RSD. I live in NY and recently had him treated at Children's Hospital, Boston for 3 weeks. They work wonders with children. I understand that you don't want to travel, but it might be worth it to give it a try. They do all the leg work for you in getting it approved through your insurance company. The biggest downfall is there's a waiting list. Fortunate for me, my son was diagnosed within 2 weeks and treated within 6 months. He is now pain free. He just went back for his one-month follow-up and he's doing great. He hasn't missed a day of school since he returned home due to the RSD. This is a small part of the rest of yours and your daughter's life. It's worth the sacrifice. There is also an article about it in the RSD Newsletter. It's part of the Mayo Clinic. Good luck and I wish you well.
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02-23-2010, 11:02 AM | #9 | |||
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Magnate
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SO sorry to hear that your daughter and yourself are going through all this right now!
Please know that I DO understand how frustrating dealing with RSD can be and that I am here for either of you if you ever want to talk (my mum is too - if you want her email address, feel free to PM me !). I have had RSD since I was 12 years old and am now 15. It is currently in my left leg and both arms. I have had the same issue as you and your daughter in getting medical treatment. We are in the UK (England) so a lot of the treatments used on adults, aren't used on children due to our health service. It took 2 years for my Doctor to try Ketamine and that is the only medication that helps me - though it only lowers my pain a little and my Doctor doesn't like me taking it often because of my age etc (he feels that it could affect my hormones). I agree with what everyone else has said, please try and find another doctor. I know it can be frustrating - I saw LOTS of doctors and my mum took me for lots of second opinions to see if anyone had any ideas on what could help. Have you looked into the Intense Physical Therapy Programs?? I'm not sure if there's one in your area but they have lots of good results in most children with RSD. I went on a 3 week intense PT Course at Great Ormond Street Hospital in London and the PTs there got me back walking. I still have LOTS of pain and am not 'cured' by any means but it makes SOO much difference being able to walk again, even if it is just short distances! I hope things start looking up for you soon. Please send your daughter my love and best wishes. Alison
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"Thanks for this!" says: | SandyRI (02-23-2010) |
02-28-2011, 02:28 PM | #10 | ||
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Dr. Katinka |
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