I am actually writing this story for my 10 year old daughter Maia who was diagnosed with AS and more… My daughter Maia was born on November 17, 2002 through an IVF procedure. I lost her twin at 11 weeks and 5 days. Maia came into this world a fighter 8 weeks early, she was supposed to be a Christmas baby. Maia was a healthy baby until the age of 2. She began to have ear infections every few weeks, sinus infections and finally ended up having 3 sets of tubes, sinus window surgery and tons of antibiotics later to be told that it was just a stage, that her immune system just wasn’t as strong as other kids. She went through many more bouts of infections and we saw infectious disease doctors, immunologists, allergists, ENT’s and no one could find anything wrong with her. She got stronger and was basically healthy until 2010 when she started all over again with monthly ear, upper respiratory and throat infections as well as strep every other month. Maia was on a different antibiotic every month until they just stopped working!
THEN . . . In November 2012, her world fell apart. Literally fell apart. She began to complain that she couldn’t continue to cheerlead (her absolute passion), play softball or do gymnastics. We were in total shock and just thought maybe she was burnt out for doing too much but it was quite the opposite. She began to complain that her left ankle was hurting her. We thought it was just a simple injury but it didn’t go away. We went to the Orthopedist Doctor and he told her she had “Sever’s Disease”, growing pains and it would go away. They casted her ankle at a 90 degree angle for 3 weeks, she was in more pain than ever and they re-casted her again for 2 weeks. NOTHING HELPED. She came out of the cast and they booted her for 8 weeks. I had to get a 2nd opinion so we went to a new Ortho doctor and he said, by the looks of her MRI, she should go see a rheumatologist. I was stunned. I didn’t even know what a rheumatologist did. I asked a million questions that this doctor couldn’t answer and left his office with my daughter and husband and all of us crying.
Here is where is gets tricky… We went to the #1 TOP RATED Pediatric Rheumatologist in our area. We waited a month to get an appointment. We then waited another 4 hours in the office for him to see us. He walked into the room, looked at my daughter and touched her ankle and her shoulders, she jumped with some pain and began to cry. He said verbatim “There is nothing wrong with this child, she is too dramatic, I barely touched her, and she jumped off the table, she needs a psychiatrist, and some sleeping pills and maybe she has fibromyalgia, but I doubt it. Come see me in six weeks.” Then he dismissed us. We waited the six weeks while my daughter began to get worse and have pain in her lower back and her left shoulder. We went back to the Rheumatologist and he said again verbatim: “Her blood work came back fine, she is faking it and she needs to get psychological help.” Needless to say, we didn’t go back to that doctor.
I posted on Facebook begging for help if anyone knew of a pediatric rheumatologist that I could go to and it worked. WE FOUND THE BEST DOCTOR IN THE WORLD… He took her in as if she was his child and ordered 22 different vials of blood work, MRI’s and treated her with respect and the best care. After the ankle pain, she was presenting with pain in her lumbar with stiffness. Concurrently, she had a headache syndrome and the headaches had intensified in the last two months. She was not benefiting from any type of NSAID. The doctor put her on SSZ 500 mg. 4 pills per day, Celebrex 50 mg. 2 times per day and omeprazole to protect her stomach. Maia just was not responding to the medication and had bouts of meltdowns and headaches every day. It was like she was “falling apart” and there was nothing I could do.
In July, we went to Georgia (from Florida) for a baseball tournament for my son and Maia was walking down a flight of stairs and slipped. I thought that she broke every bone in her body, it was a tragic fall and I couldn’t t stop it from happening. To my amazement, after she stopped screaming, she didn’t’ break any bones, but she hurt her lower back and I immediately called her Rheumatologist and told him what happened, he called in an RX and put her on bed rest. As soon as we returned home, we went to see him. She went to gymnastics camp because the doctor said she needed to stay as active as possible and went to PT two times per week. By the end of the summer, she could not get out of bed anymore. She was unable to make it through her first day of school (5th grade) and missed her 2nd day. He was so disappointed that she wasn’t responding to the medication and that she had fallen, he ordered a new MRI and 3 weeks ago she started the injectable medication Enbrel 50mg once per week. Every Tuesday, we have to give Maia the shot in her stomach and it takes over 2 hours just to get her calm enough to deal with it. SHE IS ONLY 10 YEARS OLD… Why is this happening to my little girl?
Her actual diagnosis is: distinct enthesitis, sacrolitis consistent with seronegative spondyloarthitis. The formal diagnosis is: Spondyloarthritis/enthesitis-related arthritis (ERA) with sacrocilities. Grade 1 Spondylolisthesis at L-5/S-1 and suspicious findings at L5 with Ankylosing Spondylitis.
This has taken over our lives as anyone can imagine. I also have my husband and a 16 year old son that won’t even really acknowledge that she is sick and this is forever. My daughter yells every day “Why me?”, “I have this for the rest of my life!”, “I don’t have the strength to fight this!”… My heart breaks, I want answers, I want a cure, I want my daughter back…
I will take advice, links whatever it takes to get myself ready for this life long journey that we have just embarked on. P.S. I reported the first Rheumatologist to the Health Department in my state for mis-diagnosing my daughter for 8 weeks of her life that we can’t get back. The Heath Department has taken on the case and has brought it all the way to trial. I don’t want anything from this case except for this doctor to stop mis-diagnosing children with this invisible disease. Thank you for reading our story… with love and hope!!!
Lauren , Mom of Maia age 10.
Florida, United States of America