Amplified Musculoskeletal Pain Syndrome
Jayden Myers's Bio
August 2012 the day before we left for vacation Jayden broke out in rash all over her body. We took her to Urgent Care where she was examined and diagnosed with hives, doctor said possible food allergy and gave us prednisone to help treat it. The next morning, we left on vacation not knowing what the next few days would entail. When we arrived in Ocean City, Jayden was like any normal child playing and having a great time but still having this horrible rash. She awoke us in the middle of the night crying she was in extreme pain and not feeling well. She was running a fever and the hives were everywhere. The next day she was still not feeling well but better than she was the night before, we just took it easy thinking that whatever this was, finally she’s feeling a little better. In the middle of the night she woke up crying that she hurt everywhere and just couldn’t get comfortable. In the morning, she woke up running a fever and the rash had spread everywhere and she felt like her throat was swelling shut. We immediately rushed her to the hospital, they gave her epinephrine and high dosages of steroids. Once again, the diagnosis was the same, food allergy.
We decided at this point she was too sick and we would leave in the morning for home. We left the next morning to go home, she was feeling terrible so I called her pediatrician who saw her later that afternoon. Once again, the same diagnosis, food allergy or allergic reaction to something, they prescribed more steroids. The following day she woke up in the morning screaming in pain, didn’t want to be moved and couldn’t walk, her leg was almost like it was paralyzed. We called the pediatrician who suggested taking her to the ER immediately, when we arrived Jayden was very sick. After taking x-rays, blood work, and consultation with a specialist at Hershey Medical Center they decided to do an emergency transport to Hershey. After several days of high steroids, IV meds, and close monitoring she was diagnosed with Serum Sickness and could come home.
Even though she was feeling a lot better something still wasn’t right. She kept complaining of severe pain in her right leg, foot, ankle and other joints. After several follow up visits to the pediatrician’s office, she was referred to a pediatric rheumatologist at Hershey. Testing was done and in October of 2012 and it was determined Jayden had Juvenile Rheumatoid Arthritis- enthesis related. We thought we finally had the answers to the extreme pain she was experiencing, and with the right medicines to treat inflammation she would be feeling better in no time. Although it helped with most of the joint pain she was having, unfortunately the extreme pain continued in the right foot, ankle, and leg.
We have seen orthopedic doctors, she has been treated for possible Achilles Tendon injury, Sever’s disease, pulled muscles, and sometimes told it was growing pains. She has been immobilized at times for months not really knowing why she was in so much pain all the time. She’s been on crutches for months at a time We’ve had several MRIs, x-rays, blood work every couple months and numerous visits to the ER for pain management. Jayden has been receiving physical therapy for months.
Last year Jayden came home from school one day in extreme pain, crying, another trip to the ER for pain management. This time just no relief, her leg was swollen, cold, and discolored. To even touch, run water, or to put clothes on over her right leg she would scream in pain. She was wheel chair bound for several months and was unable to walk or to put weight on her right leg. She had missed numerous days of school and was placed on intermittent home hospital teaching.
Finally, after suggesting it but never giving a full diagnosis, Jayden was diagnosed with Complex Regional Pain Syndrome. (AMPS) She was referred to the Children’s Institute in Pittsburgh where she was admitted into the hospital for a two-week program of intense physical, occupational, and aquatic therapy program. She came home walking and no wheel chair, we felt a huge relief. She was doing quite well, physical therapy a few times a week, occupational therapy and she was active more than she had been for months. Her summer was great.
School started and we thought this is going to be a great year for her, but once again the pain intensified in her right foot, leg, and ankle. She was placed on home intermittent school teaching again. It has been downhill since then. She was at a corn maze in Oct. twisted her right ankle, x-rays revealed a 3rd degree fracture w/ avulsion (chip fracture). Being immobilized for periods of time makes her condition worsen. She had yet another MRI, to see if they were missing anything because of all the excess pain she was having. It revealed the fracture was healed but active arthritis.
In November Jayden was diagnosed a viral infection, she was so sick and we ended up in the ER for an evaluation and blood work she was diagnosed with Mono. She was so sick, fatigue, fever, not able to eat because of her throat being covered with pus pockets. The following week she was diagnosed with an A-Typical Bacterial Infection and was treated with antibiotics. Since her diagnosis of Mono, she has complained of persistent throat pain, which has been treated with antibiotics. If her symptoms do not improve she will have testing done to visualize the area of concern.
Over the next few weeks it was a nightmare the fatigue, joint pain, Amplified Pain had increased, and persistent sleep difficulty. She has been taking Morphine every 6 hours because the pain had been moderate to severe. She was placed on permanent home teaching because of the severity of her condition. She was evaluated at Behavioral Sleep Clinic, at Hershey Medical Center for her on going sleep difficulties due to extreme pain. She has had some weight loss due to the fact she is unable to eat or drink at times due to a combination of abdominal pain, nausea, throat pain, and her medication. At this time, her best course of treatment is to participate in a multi-disciplinary pain management program at the Children’s Hospital of Philadelphia.
Jayden was evaluated in February by Dr. Sherry a specialist in Amplified Musculoskeletal Pain Syndrome. His diagnosis was two forms of AMPS, Complex Regional Pain Syndrome and Diffuse Amplified Pain Syndrome. It is imperative that Jayden continues physical and occupational therapy weekly to help break the pain cycle and retrain the affected nerves. In AMPS there is an abnormal short circuit in the spinal cord. The normal pain signal not only travels up to the brain, but also goes to the neurovascular nerves that control blood flow through the vessels. These nerves cause the blood vessels to constrict. This constriction restricts blood flow and oxygen to muscles and bone and leads to an increase in waste products such as lactic acid. It is the lack of oxygen and acid build up that cause the pain. The new pain signal also goes across the abnormal short circuit and cause decrease in blood flow leading to more pain. The pain becomes extremely severe through this cycle. Jayden will return to the Children’s Hospital Of Philadelphia in May, if there is no improvement by then her best course of treatment is to participate in a multi-disciplinary pain management program at the Children’s Hospital of Philadelphia. Jayden attends school when she is able and continues with Home Intermittent School Teaching. Rob and Sherry travel to Hershey Medical Center two times weekly for Jayden to receive the intense physical therapy she needs and every other week occupational therapy is included.