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 five days. Maia came into this world a fighter eight weeks early, she was supposed to be a Christmas baby. Maia was a healthy baby until the age of two. She began to have ear infections every few weeks, sinus infections, and finally ended up having three sets of tubes, sinus window surgery, and tons of antibiotics later to be told that it was ju
st 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 cast her ankle at a 90 degree angle for three weeks. She was in more pain than ever and they recast her again for two weeks. NOTHING HELPED. She came out of the cast and they booted her for eight weeks. I had to get a second 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. I left his office with my daughter and husband, 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 four hours in the office for him to see us. He walked into the room, looked at my daughter, 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, 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 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 second day. He was so disappointed that she wasn’t responding to the medication and that she had fallen. He ordered a new MRI and three weeks ago she started the injectable medication Enbrel 50 mg once per week. Every Tuesday, we have to give Maia the shot in her stomach and it takes over two 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?” and “I have this for the rest of my life!” and “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 misdiagnosing my daughter for eight 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 misdiagnosing children with this invisible disease.
Thank you for reading our story… with love and hope!!!
Lauren, Mom of Maia age 10
Florida
Submitted 09/15/2013
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
Thank you for publishing our story!! #fightlikeagirlclub
Good for you for reporting the other rheum. Praying for your lil girl, I have AS and it kills me tell her to keep fighting like a girl.
Your story reminds me so much of my daughters story. My daughter actually starting having signs of problems at a couple months of age. But everything started to get really bad at around five or six. She would have horrible back pain and very high fevers. I would take her to the doctor I worked for and they would tell me that she just had a Urinary Tract Infection and treat her with antibiotics. But she always had blood and protein in her urine. This went on for about 5.5 years. To the point that I could not handle these excuses anymore and her starting to many other symptoms that made no sense.
Her first diagnosis a year ago was kidney disease. Had to travel from Reno to Las Vegas to see a children’s kidney doctor do to Reno not having any. When we saw this doctor he made us aware that she did not have a kidney disease but he thought she had an auto immune disease. So we were than referred to a Hematologist while we were in Vegas. Finally after visit after visit and tons of blood work they diagnosed her with Ankylosing Spondylitis. But do they still do not have her pain under control nor do they know what else is going on with her. She has so many symptoms that they believe are Lupus but can’t get the tests to prove it. They always come up boarder line or negative by just a point.
She now is getting worse, in the last week her ankles are swelling, she isn’t urinating, and her headaches are getting way worse.
She will see a children’s Rheumatologist for the first time next week. I am praying that they can help her and figure out why she is so sick and make her better.
I will be praying for you and your daughter. I just happen to come across this website looking for different support groups for my daughter.
Isn’t it amazing drs are NOT listening and think it’s in the mind, I am waiting diagnosis and always said I would take disease over my children, prayers for this whole family
I went through a similar experience as your daughter. I’m 16, and I went from being a 3 sport athlete to frequently laying in bed crying in pain from my AS related symptoms. Before we knew what was going on, I was told to get psychiatric help, as well. Thankfully, I also found a fantastic doctor who diagnosed me and is progressively helping. I hope your daughter is doing well, and I’ll keep her in my thoughts!
Are you still on this blog? I need help, you’re story matches my nine year old daughters story almost exactly. We just went to one of the best rheumatology programs in the nation and was told almost 15min into the examination, it is basically psychosomatic. She misquoted labs, including her elevated CRP’s and positive HLA-B27 test. After I questioned, she checked again at the paperwork in her hands and corrected herself. It’s like she had decided her diagnosis based on the fact that my daughter was not currently in pain. My daughter is in so much pain, daily, but every single one of these symptoms come and go. She was diagnosed with Kawasaki’s in 2011 and has had various illnesses/symptoms since then. I question the diagnoses of Kawasaki’s as there were some variances and I wonder if it may have been rheumatic fever or scarlet fever, she was diagnosed with strep almost immediately after her hospital stay for Kawasaki’s. Since then she has had multiple strep infections sometimes 4-5 in one year, a few PCP visits with recorded joint pain, dating back four-five years but several vague joint complaints over the years that I stopped going to the MD for because I chalked it up to growing pains, For the past few months, starting around April 2016 to current (July 2016), daily complaints of L ankle pain, at times sitting out in softball, missed several days of school for “not feeling well”, joint pain, strep infection and weekly, at times daily visits to school nurse, increase in complaints of vision blurriness and floaters (did see and ophthalmologist who stated vision 20/20 however “bumps in the eye/eyelid related to inflammation. Start her on an allergy med” and at the time, I was not aware of AS or uveitis and didn’t think much of the complaints of blurry vision or floaters because I too was starting to think she was being dramatic or maybe it was psychosomatic and was just happy to hear 20/20 vision. I will be looking into this eye exam and question, specifically, uveitis, but I don’t have knowledge of whether this was true uveitis or unrelated inflammation. Sorry for jumping around, back to the symptoms and believe it or not I am trying to be brief! Daily stomach aches/nausea, loss of appetite without weight loss, because when she’s feeling better, at various points during the day, she will eat, loss of appetite has taken form in her denial of pleasure foods, she loves food and is never known to turn it down, so when she’s having a bad day and turning down pizza, ice cream and various favorites, it is very unlike her. She has also developed GERD (undiagnosed but c/o throat burning and “throwing up” in her mouth). I finally brought her back to the pediatric orthopedic doctor, we had seen in 2013 for L knee pain and swelling and a cyst was found in her bone and the pain eventually went away… I brought her for the ankle, he x-rayed from hip to toe and found no fractures and didn’t report any abnormalities to me. He suggested lab work as she has had ongoing joint pain without trauma. Her sed rate was high, ana +, high CRP, +HLA-B27. He referred us to a rheumatologist but we were waiting for an appt. In June she started c/o R wrist pain and not as much ankle pain, as well as back pain at night, she can’t get comfortable and in the morning she says her neck hurts, I’ve had difficulty doing her hair in the morning because of this. Her pain is real, she has opted out of fun trips, time with friends, and activities that she would have previously loved to do. Her mood has changed, she’s irritable and cranky. My daughter was a straight A student, student council rep for her class, star pitcher and had an active social life before April. She had illnesses and joint pain in the past but not this severe. She missed 16 days of school the last half and was in the nurses office for most of May and June with different ailments. She cries/whines daily about not feeling well and said the other day “I wish I had a different life. A life that didn’t have all this pain”. I had every medical record/hospital stay sent to this reheumatologist before the visit. She said she only had the referral. I find it hard to believe that after reaching out to two hospitals, two different PCP offices, a walk in care clinic, ophthalmologist office and an orthopedic office, and speaking to individuals begging to make sure her record got there before her apt that all of them failed to fax her record. I did report all these symptoms but again, she had her mind made up after I told her she is in no current pain and my daughter had full ROM at the visit. She said she has no form of arthritis, it is psychosomatic and could refer us to a pain clinic. I pleaded with her to order an MRI as my fear is ankylosing spondylitis and she did agree. However, if there is no spine damage, I fear they will rule out any other possible diagnosis and not treat my daughter. Also, I have yet to receive a phone call to even schedule the MRI but she said it may be about a month. Another month my daughter has to be in pain with no proper treatment or support. I will check this blog but please send an email if you think you can help, have any suggestions or recommendations. I set up a new private email specifically for this. momashelp@gmail.com.