Abbey’s CRPS Journey and Treatment

Hi I’m Janet and this is my best friend’s daughter, Abigail. Abigail is a funny, loving teenage girl who loves to sing. She goes to an art school and sings in Choir and in an acapella group.

In early October Abbey sprained her right ankle. Her mom took her to Orthopedic Urgent care right away. X-rays showed no fracture, so they gave Abbey an aircast boot and crutches and told her to stay off and rest the ankle for 3 weeks. After the 3 weeks Abbey was still in significant pain and unable to bare weight on the right foot.

She continued to go to school and do everything on a knee scooter and crutches. Abbey had and MRI of her foot but the results showed that everything was normal except for a bone contusion (Bone bruise) and 2 previous ligament sprains. An appointment was made at the pediatric orthopedic specialist for 11/20/23. After review of the MRI, more X-rays and examination, the doctor told Abbey that she needed to come out of the boot right away and start physical therapy. He mentioned that Abbey could be in the early stages of CRPS, Complex Regional Pain Syndrome. It was not given much thought. He said to do home exercises while waiting for the P/T Evaluation.

By now it’s been almost 8 weeks since her sprain and Abbey was still in pain and unable to bare weight.

On 12/4/23, Abbey finally had her Physical Therapy evaluation, but the actual P/T wouldn’t start for another 2 weeks due to insurance process, procedure and scheduling. During this time Abbeys’ foot developed a tremor whenever she tried to do range of motion exercises. Abbey’s therapist worked with her and also felt Abbey was developing CRPS of her right foot/leg. On 12/18/23 Abbey finally started P/T had 4 successful therapy sessions. She was making progress and even baring weight while using her crutches.

On January 2, Abbey experienced a set back and was taken to the pediatric ER because her right foot and leg went into spasm and would not stop. This ordeal was extremely painful. Abbey was given medication in the ER and the spasm finally stopped. Then again on January 6, the leg spasm started again. She was taken to the ER, but this time she was admitted. Her leg not only was in spasm but felt like it was being crushed and on fire all at the same time. She underwent several diagnostic test, EMG, nerve conduction test and an MRI of the lower spine. Also, blood work. All results were normal. She was released with diagnosis of Functional Neurological Disorder and possible CRPS of lower right leg and told to follow up with pain management and primary.

Abbeys’ mom Lisa was feeling defeated so she started reading and trying to educated her self on the debilitating disease and her research found that John Hopkins All Children’s Hospital in St. Petersburg Florida has a special in-patient program for CRPS. She called them immediately and the process to be evaluated was started. A week later Abbey was admitted to the Miami hospital again, this time with her foot locked in a point position. Several different medications were started, none of which helped control her pain. Meanwhile her leg became sensitive to touch, cold air and any movement. She felt as if her leg was on fire being smashed in a trash compactor and the trash compactor is on fire (Abbeys’ words) All symptoms of CRPS. Her foot also changed colors and temperature from purple to red and white.

The hospital and specialists in Miami were very transparent in letting Abbey’s family know that they are not familiar with treatment for CRPS and that she should seek treatment where the specialize in this condition. Abbey was discharged 1/21/24.

John Hopkins All Children’s hospital in St. Petersburg gave Abbey an evaluation date of 3/20/24. This seemed like a lifetime away. On 1/23/24 Abbey’s mom, Lisa packed up her car, rented an Airbnb, organized people to take care of her dogs and watch over her ALF. They headed to St. Petersburg to check out the area and an idea that maybe something could be done to see Abbey sooner if she was closer. Sure enough during the long drive from Miami, Abbey’s entire leg went into spasm, the foot locked in point and the knee locked as well. Abbey cried the entire car ride. Instead of checking into the airbnb, they went straight to the ER. Abbey was admitted once again, but this time into the hospital that knows all about CRPS and how to treat it. The appointment date was moved up to 2/2, the following Friday. In the hospital Abbey met the team of doctors that run the in-patient program for CRPS. They tried different medication combinations to help ease Abbey’s pain but none of them worked. They seemed to make things worse…making her weak and disoriented. Abbey could no longer use her crutches, only the wheelchair. She needed help with just about everything now.

Abbey was discharged on 1/28/24. Lisa again rented another hotel so they could stay in the area and not take the 4 hour drive and risk getting to Miami and having to go the ER and possibly miss the appointment on 2/2.

The day finally came for Abbey’s evaluation into the CRPS in-patient Rehab program. Everything has been submitted through insurance and waiting on Approval. The rehab is an intense program focusing on physical therapy, occupational therapy, Psychology sessions, music and art therapy, and meditation. Abbey will have 2 pain catheters placed in her leg, one in her thigh and the other just below the knee which will numb the leg but not weaken it, so she can do the intense physical therapy needed. After the brain sees that that foot can do the therapy, the signals and messages will be reset and Abbey should be cured. This is truly an amazing opportunity for her to be a part of this program. There are only 4 children’s hospitals in the U.S. that specialize in Pediatric CRPS but not all treatment is the same. Abbey and her family feel 100% confident in the team of doctors and their program at John Hopkins will be able to help her.

The formal start date for Abbey to enter the program is 3/18/24. Almost 7 weeks away. Lisa has decided that they will stay in St. Petersburg with the hopes that an opening will become available and Abbey will get in sooner.

As you can imagine, this is taking a toll on their family emotionally, mentally, physically and financially. I am setting up this gofundme account so that funds can be used to help their family with the accruing expenses of being away from home, work and school.

For more information on this horrible condition…CRPS click on the link.

Thank you for your time and consideration for Abbey and her family! Prayers needed and welcomed. God Bless