Maia’s Story (JIA, AS, RA, EDS, AMPS…)

This is Maia’s story, told by her mother, Lauren.

Maia was an IVF baby, and I was pregnant with twins and lost one at 11 weeks and five days. Maia was perfect, but I was so sick through my whole pregnancy that she came into this world 9 weeks early. BUT, she was healthy… (or so we thought.)

Around the age of two, Maia was sick every month with strep throat, ear, throat infections etc. She had three sets of tubes put in her ears and had surgery to remove her adenoids, sinus window surgery, and a cilia biopsy to rule out any infectious disease.

She remained “sick” every month and was on more antibiotic in three years than most adults are in their entire life.

When Maia was five years old, she stopped getting sick. We were told that her immune system was completely compromised, but Maia felt great, and we went on with life as normal until November, 2012.

Maia had just turned 11, and she started to complain of ankle and foot pain. My first thought was to go to an orthopedic doctor. We went to the ortho doctor, and he said “don’t worry, we see this all of the time”. She had Severs disease which is related to growing pains. The ortho decided to cast her foot-ankle for 8 weeks but her pain increased, so they re-casted her for four more weeks and then put her in a boot for 8 weeks, and she still got WORSE!

After 18 weeks, the orthopedic doctor said he knew this was not an orthopedic issue and said that Maia should see a rheumatologist. We found a rheumatologist and on April 15, 2013, we received her official diagnosis which was “only” ankylosing spondylitis (AS).

Maia’s journey down this long crazy road with AS  was just beginning. We were with this rheumatologist for about a year, when he finally said that he had hit a brick wall. Maia’s pain levels were 7-10 every day. He said there was nothing he could do but maybe treat her for fibromyalgia. That’s when I knew he couldn’t help us anymore.

Maia starting having flare ups, and she was falling and tripping on everything, couldn’t focus and had to stop ALL extra-curricular activities. She was in so much pain that going to school was becoming a challenge, and she was missing more and more days because she couldn’t function. Her grades were suffering, she couldn’t do things with her friends, and if she did, she needed a couple of days after to “recover”.

Maia was the epitome of a fun, busy, and very talkative happy child. Her passions included competitive cheerleading, softball, and spending summers at gymnastic camps trying to get even better for cheer season to start. Maia had to stop all those activities and for the past year had begun to lead a very isolated life.

So, needless to say, she became withdrawn, sad, lonely, and very clingy to my husband and I.

I posted my frustration on Facebook and was directed to Cincinnati Children’s Medical Center Hospital (we lived in FLORIDA). I emailed the doctor requesting an appointment, and I attached every medical record, MRI, and x-rays of Maia’s from the age of two.

I finished the email and “held my breath”. Five days later Dr. Lovell wrote me back and said, “I will take her case. I have read through all her medical reports, and she needs to come to Cincinnati immediately.”

On December 8, 2013, we left Florida and traveled to Cincinnati. Dr. Lovell and his team were gifts sent from heaven!! They did everything. They scheduled every test, MRI, etc. The team spent over four hours with us alone figuring out how we would work the next three days. I was amazed and hopeful, but also scared.

They came back and formally diagnosed Maia with a host of illnesses:

• Juvenile Idiopathic Arthritis( JIA)
• Ankylosing Spondylitis (AS)
• Hyper-mobility syndrome
• Synovitis
• Enthesis Related Arthritis
• Rheumatoid Arthritis and
• Auto Immune Deficiency

They set her up for surgery the next day to inject her SI joints and ankles. The surgery took two hours. When Maia woke up she was in pain. She said “it was a different pain”. The next night, before we left, Maia saw snow for the first time and laid down on the ground to make a snow angel in the snow, then we headed home. Maia was scheduled to go back to Cincinnati every six months to meet with her team and have additional surgeries. The plan was set. We had new doctors in a new city and were extremely excited.

On December 11, 2013 (1 day after we left Cincinnati), she had her FIRST pain-free day in over a year. It was so amazing. But the joy didn’t last long. Just two weeks after we returned home to Florida, Maia had a horrible flare up and couldn’t walk. It was an entire week of non-stop pain.

We had just left our new team of doctors, but they were so far away. Maia was crying in pain, and no one local could help. They started her on heavy doses of prednisone, and we watched her fight like a girl every day.

>>THE NEXT STEP CAME SOONER THAN WE THOUGHT:

One of the biggest misconceptions of Maia’s disease is that she looks perfectly normal. There is a very popular saying “But You Don’t Look Sick.”

In Maia’s case it is exactly that. Unfortunately, she IS sick, she won’t get better and she will progressively get worse. She won’t lose the hair on her head, but she will become disfigured. She is able to walk but eventually will be dependent on some type of assistance to get around. She is able to go to school because we now had her on a 504 plan for her medical needs at school but as she got older, we all worried if she would be able to handle going from class to class all day long in middle school and high school and what about college?

As we thought we would not have to go back to Cincinnati for six months; Maia’s body had other plans. Her pain level was hovering from a 7 to 10 daily.

In March, 2014, we flew back to Cincinnati.

The doctor explained that Maia also had a “slippage” in her L5 vertebrae on her spine. The x-ray showed the “gap” that they refer to as a slippage. Maia had surgery again on her SI joints, ankles and injections into the L5 area which is the middle part of her spine where the bones are not aligned correctly.  Doctors informed us that her Spondylolysis was now a “grade 2” and there were only “3 grades”. Her disease was progressing quickly. They also said that she wasn’t responding as well as they’d hoped on the medications.

Maia had to start IV infusions of new medication every 28 days, four hours at a time.Our lives drastically changed and nothing will ever be as it was.

In February, 2015, (Maia was 13) we moved from Florida to the suburbs of Philadelphia. The doctors in Cincinnati had been very open and honest and said that they had hit that proverbial “Brick Wall.” Needless to say, we were scared. We started with the new rheumatologist in PA immediately. We also saw a connective tissue doctor in November, 2015. She confirmed Maia’s diagnosis of Ehlers Danlos Syndrome(EDS).

I was not surprised. We knew she had it, but the formal diagnosis made it very real. There is no cure for EDS. Maia had been in her new school, trying to make new friends and keep her grades up because she missed so many days. All of these things and more caused stress.Whether it is healthy stress or unhealthy stress, it has changed Maia in ways I have never imagined. Maia has not woken up without pain in so long that we all became numb.

AND ONCE AGAIN LIFE CHANGES :

Maia was getting older and really knew her body and decided to take complete charge of it. She told her doctor that “he is not doing anything to help her, she can’t live like this anymore, she hates her life, and she needs relief.” Her doctor knew that in her medical and emotionally fragile state, everything was a risk.

She had finished 7th grade and was worse than she had ever been. She couldn’t get out of bed for days at a time. On Tuesday, July 5, 2016, she was diagnosed with  Amplified Musculoskeletal Pain Syndrome(AMPS).

Really? Another diagnosis? That was it. The doctor said it is real pain, not in her head, he sees the pain she has when he examined her. This led to Maia needing to enter an inpatient program for 30 days. All I could think of was, wait, what?? My daughter was being sent to an in-patient program for 30 full days with no time out of the hospital?

On July 19, 2016, Maia became an in-patient in the AMPS Program at Children’s Specialized Hospital in New Brunswick, NJ, 2 hours from home in PA.

Maia needed relief and this inpatient program was going to teach her how to live every day with her illnesses. She spent eight hours a day / six days a week doing, PT, OT, Psychological Therapy, Music Therapy, Art Therapy, Swimming and more. We were only allowed to visit at night and on Sundays, we could sleep there if we wanted to but we were not allowed on her floor during the day. This was one of the hardest things that I have ever had to go through but I knew it was the best thing for my daughter’s future. My husband, son and I, all took turns travelling every day back and forth to the hospital.

They had warned us that the inpatient program would be intense, but Maia did it!!  It was hard, she pushed herself every day, she fought for her health and she WON!! On August 22, 2016, Maia came home!

She started 8th grade late, but she was healthier than she had been in five years. She continued to do all of the outpatient exercises and made it through middle school. Her dream still being to cheer once she got to high school. Maia had some flare ups and injuries, but for some reason, we were able to handle everything that came our way. We are all living again.

Maia wrote the following when she came out of the hospital.

“As I get ready to start my first day of school, I want to share that I have just spent a month in the hospital. I’ve been diagnosed with JIA, EDS, AS, AMPS, RA… Over the past several years, I have been dealing with countless doctors, medications, surgeries, shots and treatments. Although I look “normal”, I am not. I don’t want people to pity me because I can’t change what happened. Sorry is just a word, I don’t want to hear sorry. Instead, what I am hoping for is that people see me for me and only me.”

Maia also posted with this a quote that says… ‘I survived because the fire inside me burned brighter than the fire around me.”# FIGHTLIKEAGIRL

THE NEW CHAPTER BEGINS:

Maia has worked so hard and had one goal that she was fiercely focused on. In May, 2016, Maia tried out for her High School’s Varsity Cheerleading team and made the team. (with doctor approval) Maia started high school in September, 2016 with the realization of her dream to cheer again right in front of her. She did fantastic.

Yes, she’s had several injuries, broken a finger and tore her ACL.Sshe sprained her wrist and  had several flare ups, but she NEVER wavered. She kept pushing through.

As I finish writing this now (August 2018), I am beyond excited to share that Maia made the Varsity Cheerleading team again and will start her sophomore year of high school next month.

Will Maia have more issues? YES.

Will she have injuries? YES.

Will she need to stay in bed after cheering or going out with friends? YES.

The difference is she is fighting like a girl every day and she is the strongest she has ever been. We don’t think this is the end of Maia’s journey, this is a forever journey, and we can’t wait to see what is next for her!! #FIGHTLIKEAGIRL

Lauren (Maia’s mom)
Pennsylvania
Submitted 08/02/2018

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.