The end of January 2016, 14-year-old Bane began having sharp lower abdominal pains along with knee pain. Over a period of a month he began limping because of the intense knee pain, even though the abdominal pain subsided. Bane loves camping with his dad, yet Bane could not even climb the ladder in the RV any longer. After several doctor visits, nothing was showing up on blood tests or X-rays. Bane
was unable to walk by March 2016 and he was now being transported in a wheelchair. Many ER visits later and weeks in the Children's Hospital, the culprit was still in hiding. They allowed us to take Bane home with no explanation, only a positive blood test of mild high calcium levels. In late March 2016, Bane began to have photophobia (sensitive to light) and a rash on his chest and arms. We had him tested for Lyme disease, which was negative. He also began to have many striae marks (stretch marks). The physicians have all agreed these markings are in strange areas and there is no explanation. Throughout April and May 2016, we were in and out of specialty clinics for Rheumatology, Neurology, and Infectious Disease. The doctors have thrown up their hands except for Infectious Disease. The physician feels this is a Neurological problem, yet nothing is showing except for the elevated calcium levels. He is still trying to help guide us and he shows he does care for Bane's health. We have appointments with Endocrinology and Neurology in July. Bane has since been in physical therapy. He is able to contract his muscles, but can not hold the contraction. They are bringing in a Stander for Bane to hopefully help him place pressure on his feet, as they have begun to change in appearance and tone. We made an appointment with an Ophthalmologist and Dermatologist. This past week skin biopsies were taken and the Ophthalmologist noticed Bane had mild inflammation around his optic nerve, along with a hilly lumpy area. She has sent the images to a Nuero eye clinic. We can only hope and pray this finding leads us to an explanation of why our healthy child is now spending most of his time in a bed. At this time, Bane has to be assisted when in the bathroom, bathtub, and is picked up to be transferred to his wheelchair. He can feel his legs, however has no control over them. His upper body strength has weakened over the past few weeks, which leaves us to needing two people assisting with transferring him. Bane is staying very nauseated and is unable to eat his normal diet. We hope the GI doctor can help us in that area. None of the physicians will give Bane pain or nausea medication in fear it may mask a symptom or change. We watch our child cry with the clicking and popping of the joints/tendons. His back stays swollen along one side of the muscle and all he keeps saying is "I just want to be healed!"
Bane has always been a healthy, happy, loving child. He is just not the stereotypical 14 year old out there. He loves old shows such as Beverly Hillbillies, Little House, Leave it to Beaver and Mork and Mindy. He loves animals and helping people. He enjoys painting, puzzles, drawing, building bird house and feeders, and making everyone around him laugh. Except lately, Bane's spirit has diminished. He is struggling to smile, his posture has changed, he doesn't make too many jokes these days. We are asking for your help, to give Bane encouragement, hope, or a smile. If you have any left over craft items, puzzles, paints, coloring books, wooden projects or any fun creative activity; we are asking you place it in a bag and mail it to Bane. We just want to keep his spirit up and are doing all we can on our end. If you feel led to assist with this fun project, please mail items to Bane Adams P.O. Box 65, Piedmont Missouri 63957
IF YOU KNOW OF ANY ONE WHO MAY OF HAD A CHILD WITH A SIMILIAR MEDICAL PROBLEM SUCH AS BANE, OR A PHYSICIAN WHO MAY CAN HELP US. PLEASE CALL US. WE ARE DESPERATE FOR ANSWERS.
