Help Alli get treatment for CRPS

My name is Melanie and my oldest daughter has CRPS.  Allison is 9 years old and has a love for gymnastics and dance.  About 2 months ago she started complaining that her foot hurt.  I took her to an orthopedic sports medicine doctor, who thought she was getting the beginning of a stress fracture and put her in a walking boot cast.  Each day she would complain even more that her foot hurt.  I took her back and he ordered an MRI and put her on crutches.  The MRI came back negative so he sent us to another doctor who put her in a cast, hoping that it was just the boot making it worse.  Still everyday she would cry about how bad it hurt.  I tried giving her Tylenol with codein and it didn't touch the pain.  The Dr ordered another MRI of the heel and ankle of her foot.  I decided then to take her to Children's orthopedic.  I took both MRIs and xray with us.  The new Dr looked them all over and checked her symptoms and told us she has CRPS.  He took the cast off and sent us on our way telling us to get physical therapy and try a pain clinic.  Leaving the doctors that day I felt like my head was spinning.  I had never heard of CRPS before then.  I immediatley started researching everything I could about it.   CRPS stands for Complex Regional Pain Syndrome.  It is a disorder of the nervouse system.  Her brain is sending the wrong signals to her pain nerves causing tremendous pain for something that isn't there.  She is in constant pain and can't walk.  It started in her right foot and has now moved up to her knee.  In finding out through all my research and speaking to many people, there are 2 ways to treat this disorder.  One is through Narcotics and physical therapy. The other is through a new therapy treatment that isn't invasive and has had no side effects.  The success rate for this, Calmare Therapy, is at 80% effective. Unfortunately Otis not covered by insurance at this time. Watching Alli in pain everyday is just the worst thing when I can't offer her any relief.  The key to this disorder is that the sooner you treat it the better outcome there is.  I am hoping to travel to one of the few locations that have the Calmare Therapy very soon.  I had the pleasure to speak with the Calmare CEO on the phone for about 45 minutes.  He was very helpful and gave me the name of his Chief Medical Doctor in Rhode Island.  Alli and I will have to travel there and spend 2 weeks for the therapy.  The therapy consists of 10 treatments total but they say that after the first one we should be able to tell if she is responsive or not.  I want Alli to have quality of life back and to not let this disorder define her.  She wants nothing more than to get back to the things she loves and get back to school with her friends.  I hope that you will take time and read the information that I attached and maybe get a better understanding of what life with CRPS is like. 

Thank you for your support.
Melanie Pickering


http://www.calmaretherapeutics.com/
http://www.rsds.org/4/youth/your_child_is_diagnosed.html
http://www.rsds.org/4/youth/your_child_is_diagnosed.html