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My Daughter's Experience

In April of 2010, my 11year old daughter bumped her head on the wooden bannister at home.  She didn't say anything to me about it but later on, while out shopping, she began to complain of severe headaches, sensitvity to light and a soreness around her head.  It wasn't until June that she was diagnosed with Complex Regional Pain Syndrome.  She has had a lot of time off school with this as the pain can be unbearable.  She recently fell and hurt her shoulder.  When we took her to A & E, the doctor saw the words Complex Regional Pain Syndrome and just dismissed her without even an X ray.
Last week, a boy at Emma's school grabbed hold of Emma's knee and twisted it.  She was in a lot of pain and was sent home.  It took two days for the pain to subside. 
I have just come from a meeting with my daughter's head of year who basically told me he believed that Emma was faking her illness to get attention as she was crying so much and "making a fuss".  I am so sick and tired of having to defend my daugher agaiinst such idiotic claims.  I have lost my job as a result of this curse and she has gone through almost 11 months of misery and pain.
Are we alone in this?
Why do people know so little about this?  Are there any similar stories to my daughter's story?  We feel so isolated as we only get to see the Paediatric Neurolgist once every four months.  She is showing improvement but now she just feels like everybody believes she's lying.
Worried Mom
lesleyann1962 lesleyann1962 46-50 2 Responses Mar 21, 2011

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Dear CaliforniaNative<br />
I'm new to this so I hope this resonse gets to you. My daughter and I would like to thank you for your warm and thoughtful response. I should add that we are not actually in America but England. My daughter is under the consultant at Birmigham Children's Hospital and he is very good. <br />
In fact he has agreed to speak to Emma's head of year to see if he can clear up any "misunderstandings" of my daughter's condition.<br />
We were very touched by your response. It's comforting to know that words of support and encouragement can come from so far away. Emma felt a little better knowing that someone had genuinely kind thoughts and prayers for her. So often we listen to the voices of discord and hate, which drown out the ones we should be listening to!!<br />
I hope your condition improves soon. With such a kind nature, I'm sure you will have lots of people around you to help you carry the burden.<br />
Thanks again,<br />
Lesley and Emma

Oh my gosh. I know exactly what your daughter is going through, and it really pains me that in our great country of ours, not only do we have doctors who are uninformed but lacking such compassion.<br />
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I was injured at a hospital in 2008, and within 3 weeks, without any other testing or anything, diagnosed with CPRS. It went from my right arm to my right leg and now I can only walk with a cane, and when I do walk or use my arm, the pain increases. <br />
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Its very hard that doctors, and sometimes, even loved ones, can approach one with disbelief. When this happens, it can feel just terrible because the pain is so high. What I experienced is that there is a 'hot' period, this lasted for me well over a year, and perhaps, if I walked more often, it could come back. <br />
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One of the most important things about this condition appears to be what we do within, the way we approach the illness. What amazes me is that I know it took me, as an adult, ultra strength, adjusting my attitude (not easy in the very high pain stages) and to realize that with doctors responding like that, or even a school, you need to move on. i find the disbelief from the medical community to be utter abuse. Open up a book, heck, open up the internet, there is more information available to doctors now if they take a moment to look. CPRS is irritating to them for some reason I can not understand since the Hypocratic oath says nothing about conditions being easy to diagnose or treat.<br />
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There is now a new Global CPRS Diagnostic tool, your doctor should be using that tool developed from the input of CPRS experts from around the world. Ask you doctor to take the time to do the research or find someone that will. I had to wait over two years for Medicare, which I will finally have in April, and I will go to new doctors. There is a specialist in San Diego, she has had success in treating CPRS and she appears to take her patients seriously. Headaches appear to be one of the side effects. I remember during the 'hot' phase that these headaches were even worse. <br />
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I did not use pharmaceuticals often before, and I have continued to try to find alternatives. I believe it has helped me that I did not take presc<x>ription drugs but used every alternative therapy I could find, from teas, to diet, to meditation, to music, to art, to comedy. The fear of having your body suddenly respond with such pain, pain that can take one into a whole other level of consciousness because the body can not take that much pain, or the mind can't. I'm a woman, I've had a baby, a c-section, but this pain is beyond anything, anything I ever knew. <br />
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I am just embarrassed that our system treats a young child like this, let alone an adult. If your doctors don't know, don't continue to paint them as the people with the know-how and you or your daughter without. I believe that every time I went into for a doctor's appointment and was treated horribly, like the time the doctor suggested I get new shoes to cure the CPRS, I was losing important healing energy. I began my days with the mantra, 'I am the doctor. I am going to help my body heal.' Remember, intention and approach through attitude will make a huge difference. <br />
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I also use daily warm baths to help alleviate the high pain. Some days, I can only sit in the water, the pain can be extreme. I see the water as a healing medium too, for my prayers of healing. I also try to make it fun, using different aromas, bubbles or oils, music. <br />
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I will hold you and your daughter in my prayers. You are not alone. Do not accept that doctors or teachers treat your daughter or you this way. Print out the signs and symptoms information, or whatever information you feel its most important the people taking CARE of your daughter should know. Print out the material that states that CPRS is NO LONGER considered a mental health condition. Hand them the one sheet and explain that you'd like them to be knowledgeable about your daughter's condition, that it is rare so you don't blame them for understanding, but that they do need to be informed. <br />
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Only 1-2 million Americans have CPRS. Its rare. We have to be the doctors. We have to use alternative pain therapies - laughter, smell, visuals, give your daughter art, or sewing or whatever she may like. My art helped me through, I even drew out my experience. You too. I have also become an advocate, I have written to my senators, even our president, to ask that this condition no longer be allowed to be diagnosed and treated in the fashion it is. Connect with others in the same condition or having the same experience, even just to read how other people experience the condition, the many, many lessons learned, and know, half our battle is just educating people on this condition so that CPRS patients are not abused by teachers, doctors, all overworked, teachers underpaid, doctors with too many incentives to not really help much when they don't understand the condition. <br />
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I started realizing, the appointments are spaced out because the doctors don't know what to do. Find a specialist. In Boston, I believe there are specialists who work with children. <br />
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I will pray for your daughter, and you, I am so sorry, I pray our country's medical system gets it together to start treating CPRS seriously as in Europe and Australia, and stop abusing patients because the condition is so little studied and understood. It is NOT the patient's fault, we don't diagnosis ourselves.