Gabby Richard’s battle with CRPS
Donation protected
If you had told me sixteen months ago, that a sprained ankle would turn my daughter’s life upside down, I never would’ve believed you.
On October 14, 2022 Gabby was playing in a field hockey game and she just happened to turn the wrong way at the wrong time and fell on her right ankle. Her dad Brian immediately brought her to urgent care and they put her in a walking boot and crutches. Their x-ray machine was down so I had brought her the next day to Marlborough Hospital where they did an x-ray but that showed everything was normal. Despite normal x-rays and a somewhat normal MRI just showing that her ligaments were torn, her pain was increasing, some days her foot, ankle and calf would be swollen, warm to the touch and turn to a deep purple color. December 14 2022 she was diagnosed with Complex Regional Pain Syndrome (CRPS).
Complex regional pain syndrome (CRPS) is a rare disorder of the sympathetic nervous system characterized by chronic, severe pain. The key symptom is continuous, intense pain out of proportion to the severity of the injury, which gets worse over time. CRPS typically occurs after an injury, trauma, or surgery when a sympathetic nerve in the body is damaged in some way, causing it to malfunction. It usually affects an extremity (foot, leg, arm, hand). CRPS is extremely rare, affecting only 5 in 100,000 children per year and is often misdiagnosed. Early diagnosis and treatment can significantly reduce long-term effects.
After receiving the CRPS diagnosis, we really had no idea what to do as we had never heard of this. One of her doctors referred us to Boston Children’s Hospital Chronic Pain Clinic. She started working with this intensive multidisciplinary outpatient pain team in April. This resulted in weekly or sometimes twice weekly appointments driving to and from Boston, which was taking a toll on Gabby’s schoolwork, time and money driving to and from Boston 1-2 times a week, time away from family and friends. The doctors and staff here were all nice for the most part but we felt they weren’t doing anything to help her get better. They were just giving her more and more medication which in turn was making her tired which then was making her miss school and time with friends and family. They repeatedly brushed off her pain and said there was nothing else they could do so her last appointment was in early January.
Gabby was feeling well enough to go to summer camp for two weeks which she was super excited about. However, while she was there unfortunately she fell and re-injured the ankle which she had injured last October. We brought her back to her orthopedic doctor and he decided he wanted to transfer her care to a different specialist. After seeing the specialist on that very first visit, he took one look at the x-rays and MRI and saw that the initial injury from last October had never healed and he also made the discovery that her fibula and tibia were no longer connected. He scheduled surgery for that following Friday. Although he couldn’t guarantee, this would help the CRPS he felt fixing the initial injury would help the CRPS start to heal.
We are hopeful that remission is on the horizon. Back in September, I made the decision to contact Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. They are home to an intensive, inpatient CRPS Rehabilitation Program. I spoke to other parents of children, who had had success with this program, we decided to book her a consult.
Earlier this week Gabby and I spent 36 hours in Florida with a team of doctors. We reviewed her medical records, she had a physical exam, and we were interviewed by this team of doctors, nurses, and rehab staff who would be working with her. After this long and intimidating process, the doctors deliberated and informed us that they are certain they can help get Gabby into remission. She will be admitted to their inpatient program March 4, 2024.
For the last sixteen months Gabby has had to miss out on All Star Cheer, school cheer, field hockey and lacrosse. For the past fourteen months Gabby has worked with a phenomenal physical therapist who was able to get her walking again and decrease her pain, however all the effort Gabby puts into physical therapy still is not enough. The doctors at Johns Hopkins All Children’s Hospital are aware of Gabby’s goals of being back out there with her teams and they are optimistic that they can get here there.
On Monday March 4th she will be brought to an operating room where one of the doctors will insert a catheter into her leg. This will continuously deliver a local anesthetic to her leg, foot and ankle. This will ensure she will feel no pain while she under goes intensive therapy for one-two weeks. The goal is that this intensive therapy reset her sympathetic nervous system. The types of therapies she will be partaking in are physical, occupational, musical, and working with a pain psychologist. When Gabby arrives home she will still have to work with a physical therapist but can hopefully get back to sports shortly after her two week stay.
To our family and friends that have read this and are able and willing to give, it is so much appreciated. All funds raised will go towards the cost of the program not paid by insurance and other medical expenses that come up.
On October 14, 2022 Gabby was playing in a field hockey game and she just happened to turn the wrong way at the wrong time and fell on her right ankle. Her dad Brian immediately brought her to urgent care and they put her in a walking boot and crutches. Their x-ray machine was down so I had brought her the next day to Marlborough Hospital where they did an x-ray but that showed everything was normal. Despite normal x-rays and a somewhat normal MRI just showing that her ligaments were torn, her pain was increasing, some days her foot, ankle and calf would be swollen, warm to the touch and turn to a deep purple color. December 14 2022 she was diagnosed with Complex Regional Pain Syndrome (CRPS).
Complex regional pain syndrome (CRPS) is a rare disorder of the sympathetic nervous system characterized by chronic, severe pain. The key symptom is continuous, intense pain out of proportion to the severity of the injury, which gets worse over time. CRPS typically occurs after an injury, trauma, or surgery when a sympathetic nerve in the body is damaged in some way, causing it to malfunction. It usually affects an extremity (foot, leg, arm, hand). CRPS is extremely rare, affecting only 5 in 100,000 children per year and is often misdiagnosed. Early diagnosis and treatment can significantly reduce long-term effects.
After receiving the CRPS diagnosis, we really had no idea what to do as we had never heard of this. One of her doctors referred us to Boston Children’s Hospital Chronic Pain Clinic. She started working with this intensive multidisciplinary outpatient pain team in April. This resulted in weekly or sometimes twice weekly appointments driving to and from Boston, which was taking a toll on Gabby’s schoolwork, time and money driving to and from Boston 1-2 times a week, time away from family and friends. The doctors and staff here were all nice for the most part but we felt they weren’t doing anything to help her get better. They were just giving her more and more medication which in turn was making her tired which then was making her miss school and time with friends and family. They repeatedly brushed off her pain and said there was nothing else they could do so her last appointment was in early January.
Gabby was feeling well enough to go to summer camp for two weeks which she was super excited about. However, while she was there unfortunately she fell and re-injured the ankle which she had injured last October. We brought her back to her orthopedic doctor and he decided he wanted to transfer her care to a different specialist. After seeing the specialist on that very first visit, he took one look at the x-rays and MRI and saw that the initial injury from last October had never healed and he also made the discovery that her fibula and tibia were no longer connected. He scheduled surgery for that following Friday. Although he couldn’t guarantee, this would help the CRPS he felt fixing the initial injury would help the CRPS start to heal.
We are hopeful that remission is on the horizon. Back in September, I made the decision to contact Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. They are home to an intensive, inpatient CRPS Rehabilitation Program. I spoke to other parents of children, who had had success with this program, we decided to book her a consult.
Earlier this week Gabby and I spent 36 hours in Florida with a team of doctors. We reviewed her medical records, she had a physical exam, and we were interviewed by this team of doctors, nurses, and rehab staff who would be working with her. After this long and intimidating process, the doctors deliberated and informed us that they are certain they can help get Gabby into remission. She will be admitted to their inpatient program March 4, 2024.
For the last sixteen months Gabby has had to miss out on All Star Cheer, school cheer, field hockey and lacrosse. For the past fourteen months Gabby has worked with a phenomenal physical therapist who was able to get her walking again and decrease her pain, however all the effort Gabby puts into physical therapy still is not enough. The doctors at Johns Hopkins All Children’s Hospital are aware of Gabby’s goals of being back out there with her teams and they are optimistic that they can get here there.
On Monday March 4th she will be brought to an operating room where one of the doctors will insert a catheter into her leg. This will continuously deliver a local anesthetic to her leg, foot and ankle. This will ensure she will feel no pain while she under goes intensive therapy for one-two weeks. The goal is that this intensive therapy reset her sympathetic nervous system. The types of therapies she will be partaking in are physical, occupational, musical, and working with a pain psychologist. When Gabby arrives home she will still have to work with a physical therapist but can hopefully get back to sports shortly after her two week stay.
To our family and friends that have read this and are able and willing to give, it is so much appreciated. All funds raised will go towards the cost of the program not paid by insurance and other medical expenses that come up.
Organizer
Nicole Richard
Organizer
Northborough, MA