Hello and Thank you for visiting my page
I completed running the 2018 Boston Marathon for Sadie Rose, my 16 year old daughter. Sadie has been a patient at Children's Hospital since she was a toddler. She went undiagnosed and suffered from chronic pain for many years. She has received many types of medical treatment including traditional pain medicine, acupuncture, bio feedback therapy, injections, and surgery. She has spent weekly stays at Children’s Hospital screaming from uncontrollable nerve pain and morphine would only take the edge off.
Sadie suffers from Eosinophilic Esophagitis, Eosinophilic Colitis, and Acute Cutaneous Nerve Entrapments. Only after surgery where Sadie was placed under anesthesia that her body was still responding to pain that a doctor from Children’s Hospital directed us to the Pain Clinic at Children’s Hospital.
Sadie missed almost all of 6th grade and missed quite a bit of the 8th grade due to her condition. We have had months were we couldn’t touch her. No hugs, no caressing her, she could not laugh, cough or sneeze as the nerve pain was so great. Sadie explained it as being “paralyzed with pain”. These simple normal everyday things would turn into tears as the movement disrupted the nerves and put her back in to severe pain. Finding the Pain Clinic was a true blessing. They started with nerve blocks, then surgery to cut the nerves in her abdomen. At the time Sadie was only the 7th person to receive this type of surgery and yes it worked! However cutting all the nerves is not an option. As the nerve pain moved to her head leaving her with pain, deafness in her left ear and numbness to the left side of her face. The nerve pain didn’t stop there it went to her legs and returned to her abdomen.
Sadie was put on the top of the list for Lidocaine Infusion treatments. Since last year Sadie has had 6 infusions with remarkable results. She is on pill form now as long as her liver can handle it. One day at a time and we are on a good streak right now. We are only at Children’s 3 times a month which feels like nothing compared to the last 10 years.
Sincerely Michael, Shannon, Hanna and Sadie Rose