Quote:
Originally Posted by sdlevitt
my child hurt her foot 7 weeks ago. One dr casted her even though there was no apparent break for 10 days, and then gave her the cast boot. The pain is below the pinky toe. We went to another Dr a few weeks later, since her pain was not getting better and she still could nto work. He diagnosed hypersensity and perscribed PT. Over the course of 2+ weeks we got her past the point of where slight touch hurt and got her in a shoe! We even got her to skate (though not walk yet). Every time she put her foot on ground she would complain it hurts. She was walking on her heel. On PT on monday she even did take a few steps in pain.
Then tuesday morning came and she was in more pain than ever before. We are back to where the slightest touch, a sock, etc hurts her foot. We went to a new Ped Ortho who said it was RSD. I am trying to get into a pain clinic for children here in Atlanta and there is a 5 week wait, even with RSD!
All my child has done since yesterday is cry and say that the pain is even worse. I know that some of it is due to teh diagnosis. Her main thing is that she is insisting on getting an MRI. She doesnt believe that there is not something real wrong with her foot. She wants to know why she was almost walking on Monday and now things are worse again. That something ahs to be wrong with the foot since she was using it and it got worse. I have the same question.
The Dr yesterday said that after 7 weeks any real injury would be better and that in kids bones will break before tendons get hurt. he also said that the foot was somewhat red, though I could not see it as much as he sees it. I am waiting for the pain specialist to return to my call. I was faxed a bunch of info.
So why did she get better after therapy and using the foot and then get worse than before like that? Also, I read about Cleveland Clinic here, but what other Pediatric options do I have. What about meds? do they work. Mirror therapy. I tried to take away teh crutches, but she wont let me. It was the only way I could get her to school. She did nto want to go to school today period, but we eventually got her there. She is in private school, so that really helps. she has a friend that got to stay home with a sprained knee and got an MRI, so I am sure that is where her desires are coming from, but she doesnt understand that her injury is different. She doesnt understand how its messages going to brain, but the foot "physically" is ok. I was so hopeful when she skated last week.
One very sad mama.
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Welcome to Neurotalk,
You come to a wonder place where you will find comfort and so many educated friends that will be 'here' for your daughter, yourself, and family.
I saw on the national news about a week ago the story about a young woman who got RSD and news showed her being able to run with no problems, but when she walked, she had dystonia,, an involuntary movement that is uncontrollable. That may explain why she could skate, but not walk. With some people that is a symptom of RSD. rsd.rx is a wonderful site to learn from. On the part puzzles list that you were referred to is a list of 146 questions from RSD patients and Dr. Hooshmand's answers. He is a retired rsd specialist in Florida that kept his website up for the benefit of patients and families of RSD. It is really informative.
I've heard so many good thoughts about the Cleveland Clinic-I believe they have a Childrens RSD part to their hospitall. Is that the one you have an appointment for next week?
I am a Mom with RSD. I'm 61 now and our daughter was 15 when I got RSD following breast surgery = benign tumors. I got frozen shoulder following the surgery (which was really rsd) but was sent to physical therapy right away. I decided to do massage therapy right before physical therapy to warm up my muscles and make the physical therapy, which was extremely painful, speed up the range of motion. I believe that also help desensitize my rsd shoulder. I went into remission for over a year. I took pain meds before the therapy. They told me it might go into the other shoulder and it did.
I didn't get a rsd diagnosis for 4 years. I had a second remission after the other shoulder therapy. The 2nd remission last over a year also-still undiagnosed. While water skiing, felt nerve pull in hand-original rsd arm. Was misdiagnosed by rheumatologist as rheumatoid arthritis, although the test was negative for RA. I knew he was wrong and flew across the country to a well known Orthopedic Hand Surgeon. He diagnosed me as rsd in 1 minute. Nuclear med test supported him. He had me in pt the next day and ordered a Tens Unit. I came back to Phoenix, AZ and found a good neurologist and a good Ortho Hand Dr. Both supported RSD diagnosis and got me into PT.
That's why you have been encouraged to get your daughter to good RSD DR. as soon as possible. Time is critical along with good rsd dr.
Research as much as you can-although it can be overwhelming. Like what was encouraged-keep hope alive. Children, & early diagnoses, really do have a better chance of remission.
I know you are very scared, but please know you both are in our thoughts and prayers. Ask anything you want-we are here for you both. Take care, loretta and soft hugs to your daughter.
