I have a 16 year old daughter. For 3 years her right leg has been going numb. We live in the Baltimore area (supposedly the best doctors are here, Johns Hopkins, etc), When we told her first pediatrician that her leg was going numb, she explained the symptoms and he said she was making it up. There began a round of doctors, many who knew nothing (or next to nothing) about what was wrong with her.
Severe headaches. Fatigue. Right side of her body going numb, starting with her foot. Trouble balancing. Dislocations. Joint Pain. According to her doctors, she was "making it all up" and I was stupid enough to be conned by her.
One of the many doctors we saw was Dr. Howard Levy at Johns Hopkins who said she did not have Ehlers Danlos Syndrome. Several neurologists. Along the way, she needed hand surgery for some pinched nerved in her hand but first we had to see 5 "hand surgeons" before we found one who knew what was wrong with her hand (Dr. Hugh Baugher, Union Memorial, was great).
Finally, Dr. Clair Francomano diagnosed her with Ehlers Danlos Syndrome. Started us in the right direction, with the right doctors, and she is not diagnosed with Chiari Malformation and Tethered Cord.
Here is my point. Along the way, my daughter has been in excruciating pain. She cannot get out of bed at times, cannot walk. Severe muscle spasms. Her head, neck, shoulders, back and knees hurt 24 hours a day. NO ONE and I mean NO ONE will give her any pain medication.
So I made her an appointment at Kennedy Kreiger's Pediatric Pain Clinic. We spent 5 hours -- YES, FIVE HOURS -- being evaluated by the staff there. Physical therapists, psychiatrist, and others. The pain controls my daughters life. She is home schooled, she can't walk through a mall, she cannot even spend time with her friends because she has all - consuming chronic pain. She opened up her heart to them, told them how she felt, was she has gone through.
Finally, Dr Sabine Kost-Byerly came in. She told my daughter to walk for 30 minutes every day. THAT'S IT!!! We went in there with doctors notes showing she has EDS, Chiari and Tethered Cord. Severe, disabling Migraines. So, my daughter said, "can I just have something for my migraines, please?" The doctor said, "No."
Has anyone else encountered this? How do you handle it? AND WHY ARE THEY TREATING HER LIKE THIS? It is breaking my heart seeing her in so much pain every day and no one will help her. WHY? It it because she is 16? Because she looks healthy on the outside? Any ideas or stories would help.
Thank you for reading my long story.