Justin Burch undergoing treatments to battle painful illness
Canton High School student Justin Burch has been battling health issues pretty much since birth but what he is going through currently is arguably his biggest challenge.
Justin, 15, along with his parents, Todd and Amanda Burch, flew to Philadelphia Aug. 25 for Justin to begin a series of treatments at the Children’s Hospital in Philadelphia under the direction of Justin’s treating physician, Dr. David Sherry of the Rheumatology & Amplified Musculoskeletal Pain Syndrome Department at the hospital
The treatments began Aug. 27 and were scheduled from 8 a.m. to 4 p.m., five days a week for four weeks, according to Amanda.
Justin was originally diagnosed May 17 with CRPS (Complex Regional Pain Syndrome) brought on from a slight injury to his hand Apr. 20, however, his diagnosis was changed in June to AMPS (Amplified Musculoskeletal Pain Syndrome).
“CRPS is more localized to one area and AMPS is the same thing, yet affects many areas, which Justin now deals with,” Justin’s mother, Amanda Burch, said. “This is where the nervous system causes the veins to constrict resulting in excruciating pain and in extreme cases does not go away without retraining the nervous system.”
CRPS and AMPS pain has been explained by Dr. Sherry as the most severe pain one can go through and is comparable to the pain of childbirth, according to Amanda. She said that pain medication does not work due to the nerve pain.
“We realize now that Justin has suffered for years from different flare ups that were medically unexplained,” pointed out Amanda. “AMPS is a result of ‘the perfect storm’ that has occurred within Justin’s body. What we once thought was an unfortunate set of circumstances and individual isolated events has turned out to likely all be related as one thing led to another. We believe his nervous system has been compromised for a very long time now.”
Fast forward to the fall of 2017 when Justin became very nauseated and eventually had blood work done in November, according to Amanda.
“The results were negative,” recalled Amanda. “In January of this year, he had played in his first golf tournament of the season when he became ill the next morning. We found out that one of the other boys on the team had been diagnosed with the flu and we thought that he had the flu. He became extremely nauseated.”
Amanda, who is the health science teacher at Canton High School, allowed Justin to come into her classroom that day and lay down on the hospital bed that afternoon that was there.
“We went to the doctor and had flu tests run which were negative,” said Amanda. “We ended up the following Monday at the emergency room at Medical City. All kinds of tests were run. Through the help of our friend, Laura Massey, the ER director came and visited with us about Justin. The doctor told us that she could not figure out what was wrong with him. We were sent to another specialist. This was in early February this year.”
For two weeks afterwards, Justin continued to suffer from extreme nausea. The next specialist he visited could not come up with immediate answers either but sent Justin home with what Justin called a message of hope.
Justin continued to feel “horribly” for the next couple of weeks before his health started to improve until a diagnosis was received that Justin was suffering from mono.
On Feb. 18, Justin and his family went to church and out to lunch before he decided to go visit his grandparents.
“He complained about pain in his back,” said Amanda. “We thought it was due to the way he slept and that he had just stretched some muscles. Later in the week, he came into my classroom and said he was having trouble breathing. He could not stand up straight. We thought it could be a problem with his appendix or gall bladder.”
By the time Justin was taken back to Medical City Feb. 26, he could not walk or talk, according to Amanda.
“It hurt for Justin to talk or breathe regularly,” she said. “He was admitted to the hospital. They ran tests on his gall bladder and they came back negative. The problem was believed to be his kidney.”
Justin has had only one kidney since birth. Amanda refused to believe that the kidney was the issue.
“I know that God gave Justin a healed kidney,” emphasized Amanda. “We waited 24 hours. We were then told that the problem was not his kidney. Justin’s breathing was so shallow. By that point, you could not touch him and he could not move.”
After a nine-day hospital stay in March, Amanda said that Justin had surgery to remove his appendix and gall bladder against the better judgment of his surgeon.
According to Amanda, Justin had suffered with extreme pain for so long that after surgery, he felt great and was a new kid.
Four hours after surgery, Justin wanted to walk and eat. “He never took one bit of pain medicine at that point,” said Amanda. “The day we left the hospital, Justin said that this was the best that he felt in his entire life, at least since the sixth grade. Justin wanted to go to the golf course when we got home from the hospital.”
Six weeks later, on April 20, on the day that he was scheduled to be medically released to go back to playing golf, Justin went into his mother’s classroom to pick up his school books when he bumped his hand on the corner of a desk.
“Instantly, he was hurting,” said Amanda. “I thought maybe he had a stinger. He told me how bad his hand was hurting. His hand started swelling later that day. He could not move his hand at all. We took him in for an X-ray. We were told that it was a sprain and to come back in a week if there was not any improvement. His arm then started swelling. We were sent by the doctor to a hand specialist in Tyler. Justin could not open his hand. He was in unbelievable pain. Blood work and an MRI was done. He could not stand to be touched. All the tests came back negative.”
Paperwork on the subject of CRPS was shared with the family. “We were told by the doctor that this was rare but it was not being ruled out,” said Amanda. “The doctor said he would not put that in Justin’s chart until he was sure. He wanted Justin to have a three-phase bone scan. I really thought that it was going to be bone cancer but as it turned out, it was CRPS.”
Amanda discussed the potential results of CRPS. “When you research this, you find cases of CRPS that could lead to amputation,” pointed out Amanda. “It is so heartbreaking. CRPS is also known by some to be the suicide disease because the pain hurts so bad. I never spoke about that in front of Justin but I know that Justin did his own research. That scared me.”
From that point, Justin’s body began to decline, according to Amanda. Justin then began to talk about his legs twitching uncontrollably. “A few days later, Justin had a terrible migraine headache,” said Amanda. “I did not know at that point what to do.”
Amanda received a phone call from Tiffany Tunnel, whose daughter, Piper, also from Canton, was diagnosed with AMPS. “I had no clue what she was talking about when she called,” recalled Amanda.
Piper was in a wheelchair for months a couple of years ago before she was properly diagnosed, according to Amanda.
Piper’s father and Justin’s father, Todd, worked together at a sour gas plant for about eight years. “The Tunnells have been a wealth of knowledge through this process,” said Amanda. “They shared with us what Piper had gone through.”
There were seven facilities in the U. S. where treatment was available for those suffering from AMPS, according to Amanda.
“We wanted to go to the best facility,” pointed out Amanda. “We were told by the doctors that we could be referred to any facility that we chose. We tried to get into the facility in Philadelphia, the Mayo Clinic and Boston.”
Meanwhile, Justin’s headache became worse when he stepped outside in the sunlight. “The sun was so piercing and hurt his eyes so bad,” said Amanda. “It had gotten so bad for him that we could not turn on lights in the house. The eye sensitivity has gotten better with the exception of bright lights especially at night when oncoming cars have their headlights on. His calf muscle really began to hurt.”
Piper, 12, visited with Justin about what she has been going through with AMPS. “She was a champ when she visited Justin,” emphasized Amanda. “The pain is so tremendous. It is hard for Justin to explain it to us. The pain level from laughing and sneezing is horrible. He was withering away in front of us. I thought Justin was going to be in a wheelchair or bound to a bed. Later, he was suffering from pain in his neck and shoulder.”
A pilot program on AMPS was started in Dallas but the Burch’s were encouraged to take Justin to the children’s hospital in Philadelphia.
“We were there for five days in June,” recalled Amanda. “We visited with Dr. Sherry. At that point, the diagnosis was changed to AMPS.”
Amanda began sharing with Dr. Sherry about prior medical issues Justin was having when he was younger. Justin lost his hearing in the fourth grade and had to wear hearing aids.
When Justin was in the seventh grade, he could not walk and was on crutches for two weeks. A couple of months later, he was back to normal.
“Dr. Sherry told us that Justin was a perfect candidate for their AMPS treatment program and that he would get better after going through this,” pointed out Amanda. “You learn how to cope with it and you also learn how to head it off when you have a flare up. Piper knows that when she is having AMPS pains that she needs to run and then, the pain subsides. It is important for him to stay out of stressful situations. Justin is positive in his outlook.”
Hundreds of other children have and are currently seeking similar treatment that Justin is going through now in Philadelphia, according to Amanda.
The Burch family recognized a number of individuals who have helped Justin throughout his illness including Dr. Jimmy Dee Baugh, Betsy Chappel, Dr. Adam Shar, Dr. John Turner, Dr. Sherry, Katy Brown, Shonda Moore Harris and Lawrence Greer.
“Also, we are beyond thankful for all the love and support shown from so many including our family friends, some extra special teachers, Canton ISD coworkers and administration, Prairie Valley ISD and friends,” emphasized Amanda. “They have brightened many days through prayers, phone calls, texts, visits, meals, hospital snacks, donations, gift cards, cards and even some have helped with laundry and mowing our yard and taking care of our pool to make sure it was ready for Justin to use for therapy once we returned home from the hospital.
“It has been a very long year to say the least but with so much consistent understanding, love and support, we have made it and are making it,” said Amanda. “It is very hard for people to understand the amount of suffering Justin goes through every day because he is such a trooper. He chooses to make the best of a very bad situation and does not in many ways ‘look or appear’ sick. He says, ‘Well, I am alive and I have to keep living so I have to try and smile even though it is putting on a mask.’ It is very difficult that others don’t realize the pain he endures 24 hours a day because he pushes so hard to appear normal. He does not want anyone to feel sorry for him, he just wants true relationships. Justin’s strong faith is what keeps him going and always has. He is tough and will do and already does what it takes to get better.
“The intense program in Philadelphia will retrain his brain and nerves,” summarized Amanda. “To do this, his body will be put through more pain than one can possibly imagine. This will be the absolute hardest thing he may ever face in his entire lifetime, however, he is willing to go through anything it takes to not let AMPS control any more of his life than it already has. Our prayer is that Justin will return from Philadelphia totally functional and ready for a new start and equipped to deal with anything the future may bring from this awful condition.
“I now see the bigger picture of us being able to share with others through Justin’s illness about Jesus Christ,” pointed out Amanda. “If people can see Christ in us through this, it’s all worth it.”
