[Millerprof]

Things just keep getting better! I posted previously that my daughter who is 8 y.o. developed RSD after she bruised a bone on January 20th. She was on crutches for about 6 or 7 weeks until she was seen at a children's pain clinic a couple of weeks ago in MN. She unfortunately inherited my genes apparently (I had RSD 4 years ago--I recovered after about 1 1/2 years). She was given the diagnosis of RSD/CRPS and told to lose the boot and crutches ASAP, and they taught her self hypnosis and relaxation exercises, and prescribed some Lidoderm patches. We took a trip to AZ last week and she was able to shed her crutches and boot and start walking. The color in her foot looks a lot better and she seems to be walking pretty normally after a week of practice, but she still says she has pain in her foot. Today was her first day back to school without crutches so that was a big milestone. She said it hurts but she did it anyway; she just stayed in from recess to rest her foot. Tonight I had to work but when I got home I was informed that she actually rollerbladed around the neighborhood tonight! I'm so proud of her for working so hard, but at the same time I'm hoping she's only doing as much as she can handle and not over-doing it. She's a figure skater and she's been off the ice for 2 months now. I can't wait for the day I get to watch her back on the ice again.

[gabbycakes]

Originally Posted by Millerprof

Things just keep getting better! I posted previously that my daughter who is 8 y.o. developed RSD after she bruised a bone on January 20th. She was on crutches for about 6 or 7 weeks until she was seen at a children's pain clinic a couple of weeks ago in MN. She unfortunately inherited my genes apparently (I had RSD 4 years ago--I recovered after about 1 1/2 years). She was given the diagnosis of RSD/CRPS and told to lose the boot and crutches ASAP, and they taught her self hypnosis and relaxation exercises, and prescribed some Lidoderm patches. We took a trip to AZ last week and she was able to shed her crutches and boot and start walking. The color in her foot looks a lot better and she seems to be walking pretty normally after a week of practice, but she still says she has pain in her foot. Today was her first day back to school without crutches so that was a big milestone. She said it hurts but she did it anyway; she just stayed in from recess to rest her foot. Tonight I had to work but when I got home I was informed that she actually rollerbladed around the neighborhood tonight! I'm so proud of her for working so hard, but at the same time I'm hoping she's only doing as much as she can handle and not over-doing it. She's a figure skater and she's been off the ice for 2 months now. I can't wait for the day I get to watch her back on the ice again.

Dear Millerprof:

What a great moment for you and your daughter. Children are resiligent(spelling), and seem to spring back so much easier then us. I'm so happy for her.

I feel I just want to tell you one thing only because I feel I have to. I know you probably know this she's a ice skater, my son also skates he played ice hockey,travel ice hockey, vasity and lettered in HS and safety was always an issue. Anyway when I read that your daughter was rollerbladiing just plesae make sure she wears elbow pads. Thats how I got hurt and almost lost my arm. Your saying how could that happen? I didn't think it could but it did. You proabably think I'm crazy but whenever I see kids skating ice or land and they don't have elbow pads on it scares me it makes me nauseas I'm not kidding. Obviously I did not have pads on that night I got hurt and if I did this would probably not have been so bad or not at all.

Again, congragulations it's so nice to here a good outcome.

Gabbycakes

[byates]

Originally Posted by Millerprof

Things just keep getting better! I posted previously that my daughter who is 8 y.o. developed RSD after she bruised a bone on January 20th. She was on crutches for about 6 or 7 weeks until she was seen at a children's pain clinic a couple of weeks ago in MN. She unfortunately inherited my genes apparently (I had RSD 4 years ago--I recovered after about 1 1/2 years). She was given the diagnosis of RSD/CRPS and told to lose the boot and crutches ASAP, and they taught her self hypnosis and relaxation exercises, and prescribed some Lidoderm patches. We took a trip to AZ last week and she was able to shed her crutches and boot and start walking. The color in her foot looks a lot better and she seems to be walking pretty normally after a week of practice, but she still says she has pain in her foot. Today was her first day back to school without crutches so that was a big milestone. She said it hurts but she did it anyway; she just stayed in from recess to rest her foot. Tonight I had to work but when I got home I was informed that she actually rollerbladed around the neighborhood tonight! I'm so proud of her for working so hard, but at the same time I'm hoping she's only doing as much as she can handle and not over-doing it. She's a figure skater and she's been off the ice for 2 months now. I can't wait for the day I get to watch her back on the ice again.

It is wonderful to hear that you daugther is doing so well. My daugther just completed her first ketamine treatment. We have some good results. The RSD is not gone but is much better. What did you do to get yours to go away completly. My daugther has full body RSD. She has had it since she was at least 8 yrs old. She is know 18 yrs old. It took ten yrs to get a diagnoses. She does not fit the text book case.

[Millerprof]

Originally Posted by byates

It is wonderful to hear that you daugther is doing so well. My daugther just completed her first ketamine treatment. We have some good results. The RSD is not gone but is much better. What did you do to get yours to go away completly. My daugther has full body RSD. She has had it since she was at least 8 yrs old. She is know 18 yrs old. It took ten yrs to get a diagnoses. She does not fit the text book case.

I'm sorry that it took her so long to get a diagnosis. Unfortunately I don't think a lot of doctor's recognize what it is and it can go untreated for too long. There seems to be a myth I think also that some doctor's believe that children don't get RSD, or that it's so rare in kids that it couldn't possibly be RSD. When I first questioned my daughter's orthopeadist about her symptoms he said "Well, that's really rare in children." I said I don't care if it's rare in kids; it's not a typical response to an injury in anyone, but I had RSD--I KNOW what it is. Even the first pain doctor I took my daughter to did not want to diagnose it as RSD. His advice was to cast it and stay off it for another month. WORST advice to give for RSD and I didn't do it. So I found a program that specializes in children's pain; they got her in within 2 days after hearing the diagnosis was probably RSD because they recognized the importance of early treatment (otherwise it would have been a 3-4 month wait to get into the program). They DID diagnose it and got her started in treatment right away (about 6-7 weeks post-injury). So they say the prognosis for her is really good; that it typically takes about as long as it took to FIND treatment for the symptoms to subside. As we know, the longer it takes to get treatment the more chronic it can become, and the more it can spread. But I truely believe that if I didn't know what RSD was having had it myself, it would still be undiagnosed in my daughter. They DO think it has a genetic component--a predisposition for nerve hypersensitivity, so unfortunately I passed this on to my daughter . I'm glad your daughter is getting ketamine treatment and feeling some relief. I hope it gets better for her. You asked what I did to get mine to go away. First--I was diagnosed within about 6 weeks following my surgery; it was very clear what I had and I was fortunate that the surgeon recognized it right away. I had the discoloration, swelling, sweating, coldness, rapid bone loss in the foot, extreme pain where I didn't want the doctor to even remove my stiches. It throbbed. This turned into sort of a deep, cold bone pain and severe muscle pain that moved up my leg. I never had much of the burning pain that a lot of people get--once in awhile I would get it but my pain seemed to be "deeper"--in my muscles and in my bones. My nerves felt like when you rip a band-aid off your skin really fast. My ankle was almost frozen in place--I could barely move it at all (even though my surgery was more toward my toe). I couldn't let my daughter sit on my lap; it hurt too much. I had aggressive treatments right from the beginning. I had several lumbar sympathetic blocks and an ankle block (about 7-8 blocks total over the course of several months). I was on Gabapentin for quite awhile (as well as a host of other meds which I didn't really find effective). I did a lot of PT, including aqua therapy (which I think was one of the most important things I did). I had a TENS unit. I tried STS therapy for 2 weeks in the clinic but then my insurance wouldn't pay for the equipment. I did biofeedback and mirror therapy. I would try to focus on parts of my body that DIDN'T hurt. I did desensitization therapies. I did some laser therapy and ultrasound. I feel like I tried almost everything that I thought could possibly be helpful. I finally got the hardware removed from my foot and then went to hyperbaric oxygen therapy for almost 40 sessions. It still lingered for a bit, but I still kept exercising and doing desensitization, and eventually it slowly went away. But it did take about 1 1/2 years for me. I don't have pain anymore, but I do have some nerve "strangeness" that reminds me what lies beneath the surface, ready to be triggered by something else if I'm not careful. I can't describe it--it's NOT pain; I think maybe it's more "body memory." I'm praying that your daughter can make a full recovery. Are they planning on doing any PT with her now that the pain is a little better?

[byates]

Originally Posted by Millerprof

I'm sorry that it took her so long to get a diagnosis. Unfortunately I don't think a lot of doctor's recognize what it is and it can go untreated for too long. There seems to be a myth I think also that some doctor's believe that children don't get RSD, or that it's so rare in kids that it couldn't possibly be RSD. When I first questioned my daughter's orthopeadist about her symptoms he said "Well, that's really rare in children." I said I don't care if it's rare in kids; it's not a typical response to an injury in anyone, but I had RSD--I KNOW what it is. Even the first pain doctor I took my daughter to did not want to diagnose it as RSD. His advice was to cast it and stay off it for another month. WORST advice to give for RSD and I didn't do it. So I found a program that specializes in children's pain; they got her in within 2 days after hearing the diagnosis was probably RSD because they recognized the importance of early treatment (otherwise it would have been a 3-4 month wait to get into the program). They DID diagnose it and got her started in treatment right away (about 6-7 weeks post-injury). So they say the prognosis for her is really good; that it typically takes about as long as it took to FIND treatment for the symptoms to subside. As we know, the longer it takes to get treatment the more chronic it can become, and the more it can spread. But I truely believe that if I didn't know what RSD was having had it myself, it would still be undiagnosed in my daughter. They DO think it has a genetic component--a predisposition for nerve hypersensitivity, so unfortunately I passed this on to my daughter . I'm glad your daughter is getting ketamine treatment and feeling some relief. I hope it gets better for her. You asked what I did to get mine to go away. First--I was diagnosed within about 6 weeks following my surgery; it was very clear what I had and I was fortunate that the surgeon recognized it right away. I had the discoloration, swelling, sweating, coldness, rapid bone loss in the foot, extreme pain where I didn't want the doctor to even remove my stiches. It throbbed. This turned into sort of a deep, cold bone pain and severe muscle pain that moved up my leg. I never had much of the burning pain that a lot of people get--once in awhile I would get it but my pain seemed to be "deeper"--in my muscles and in my bones. My nerves felt like when you rip a band-aid off your skin really fast. My ankle was almost frozen in place--I could barely move it at all (even though my surgery was more toward my toe). I couldn't let my daughter sit on my lap; it hurt too much. I had aggressive treatments right from the beginning. I had several lumbar sympathetic blocks and an ankle block (about 7-8 blocks total over the course of several months). I was on Gabapentin for quite awhile (as well as a host of other meds which I didn't really find effective). I did a lot of PT, including aqua therapy (which I think was one of the most important things I did). I had a TENS unit. I tried STS therapy for 2 weeks in the clinic but then my insurance wouldn't pay for the equipment. I did biofeedback and mirror therapy. I would try to focus on parts of my body that DIDN'T hurt. I did desensitization therapies. I did some laser therapy and ultrasound. I feel like I tried almost everything that I thought could possibly be helpful. I finally got the hardware removed from my foot and then went to hyperbaric oxygen therapy for almost 40 sessions. It still lingered for a bit, but I still kept exercising and doing desensitization, and eventually it slowly went away. But it did take about 1 1/2 years for me. I don't have pain anymore, but I do have some nerve "strangeness" that reminds me what lies beneath the surface, ready to be triggered by something else if I'm not careful. I can't describe it--it's NOT pain; I think maybe it's more "body memory." I'm praying that your daughter can make a full recovery. Are they planning on doing any PT with her now that the pain is a little better?

Her doctor recommend Watsu therapy (water). We started some warm water exercises on Monday. She was able to take it for 25 min before the water started hurting. We go back today. The doctor does not want her to do anything to intensive just yet. He does not want to take the risk of injury.

[Millerprof]

Originally Posted by byates

Her doctor recommend Watsu therapy (water). We started some warm water exercises on Monday. She was able to take it for 25 min before the water started hurting. We go back today. The doctor does not want her to do anything to intensive just yet. He does not want to take the risk of injury.

Great! Hopefully she'll be able to keep increasing her time a little bit each time. Did they start her out just walking in the water?

[kathy d]

Dear MillerProf,
Yeah!! I am sooo happy for Emily. I have continued to pray each night for her since you first mentioned she had rsd. I am so happy my prayers are being answered. I also pray each night for those suffering with chronic pain especially rsd that we will have healing in our bodies. I am so happy to hear your daughter is skating again. Tell her to keep up the great work. She is an amazing child.
Take care,
kathy d

[Millerprof]

Originally Posted by kathy d

Dear MillerProf,
Yeah!! I am sooo happy for Emily. I have continued to pray each night for her since you first mentioned she had rsd. I am so happy my prayers are being answered. I also pray each night for those suffering with chronic pain especially rsd that we will have healing in our bodies. I am so happy to hear your daughter is skating again. Tell her to keep up the great work. She is an amazing child.
Take care,
kathy d

Thank you, Kathy! She is slowly getting back into figure skating, too. She is doing really well. If you ask her, she says she has pain, but she doesn't talk about it very often and you would never guess it by looking at her and what she's able to do. The color in her foot even looks normal. I'm amazed at how far she's come, and I am so happy she had an early diagnosis and they were able to get her on the healing path. I'm hoping eventually she'll be totally pain free.