Preston Downing | CaringBridge

Preston Downing Preston

Latest post: 7/11/2015
Preston has Complex Regional Pain Syndrome, POTS, high intercrainal brain pressures, EDS, migraines,  and gastroparesis. He has also had 6 c-diff infections, MRSA, and kidney stones. Preston spent over 7 months in the outpatient rehab program at Stanford. In this program he regained his function and learned how to refocus off the pain. Preston is a fighter and and an amazing youngman. Everyday he lives with intense pain, but is learning to deal with the pain. Humor is quickly becoming a great pain killer.

Preston broke his left wrist when he was 12 years old. After they took the cast off his arm it still hurt and he said it burned. We were lucky that his doctor knew it was CRPS.

We were sent to the Pain Clinic at Lucile Packard Children's hospital. Dr. Krane was his doctor and assured us things would be okay and they could get this in remission. He was right! After 3 months of physical therapy and one nerve block everything stopped. After Preston woke up from the nerve block, he never had any CRPS pain again. We closed that chapter in our lives....SO we thought.

Two years later Preston developed stomach pain and his doctor wanted to do an endoscope to rule out anything serious. The IV was started in his left CRPS hand. The minute they put the medicine in Preston's IV he said it felt like it was on fire. I felt sick to my stomach...Preston words to me before he fell asleep, "It burns like CRPS". He was correct and his CRPS has come back so much worse than ever before.

We were fortunate we were already connected into the hospital. They got him in right away where he saw Dr. Brooks and she confirmed that the CRPS was back. Preston went through 25 nerve blocks, 4 failed pain pumps, started meds, and spent over 7 months in the outpaitent pain program. None of this worked and his pain increased.

He left the program pain program in September 2011, because he had regained full function of his left arm. The pain program focuses on function not all the pain being gone.

Sadly, even with the full function Preston's CRPS is not getting any better and has actually spread. It is in his left arm, right arm, both feet, and lower left back. He also suffers from terrible migraine headaches.

Preston has had 16 ketamine infusions, which have helped him so much. We have found ketamine to be the most effective way to keep his pain down. Preston also has a spinal cord stimulator, which has also helped. The stim was removed in 2014.

Three years into this battle with CRPS Preston has learned to live the with pain. Sadly, his other conditions have changed the quality of his life. His gastroparesis has caused him to be unable to eat like he used to and he has lost drastic amounts of weight. He lives daily with vomiting and nausea. His POTS causes his heart to race, be extremely fatigued, causes dizziness, and sometimes faints. He receives 2 litters of fluids twice weekly to help keep him hydrated.

Preston is an amazing youngman. He is caring, loving, and would give you the shirt off his back. He is a strong person who continues to amaze me everyday.

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