Monday, July 12, 2010
The beginning of the JRA Journey for the Sloan Siblings- Jake & Hannah.
Bobby and I were thrilled to learn we were having a baby girl! But immediately after the excitement, we were afraid of the thought of what if she got arthritis. We already knew too much information on JRA(juvenile rheumatoid arthritis) and was well aware it was more common in girls than boys and there may be a genetic predisposition to JRA. We began praying everyday that we would have a healthy, baby girl and would not get arthritis like her mom and Grandma.
Hannah was born on June 4, 2004. At 9 days old- Hannah got her first cold and double ear infections. Her first of many doses of ATB- got her feeling better for another 2 weeks. A month old- Hannah got another cold and double ear infections. This pattern did not stop for Hannah's first year of life! Hannah had over 9 ear infections with colds,colic baby for first 3 months, GERD, severe constipation , bronchitis ,tooth decay and constant HIGH FEVERS ect... I got to hear so many people's opinion..... People were so insensitive and thought I was exposing Hannah to viruses, and maybe I wasn't giving her the right formulas and maybe my house was "sick". I did everything a mom could do-- I gave up my career in management in a nursing home, I solely breast fed Hannah for 2 years and 6 months,and tried my best to get my baby girl healthy!! I knew at this time "something" was wrong! My gut told me deep inside Hannah was in pain and she was my "velcro baby" for a reason! For those of you who might remember Hannah as a baby- she did not separate from mommy EVER.
Hannah's second year of life was very similar-- always sick and spiking FEVERS all the time! Hannah had no interest in foods, delayed in speech and still glued to Mommy only! At Hannah's 2nd well check up with her primary physician- we talked about all her illnesses and concerns. I mentioned to him that she appears to be in pain. I see her playing and then drop to the ground-crying! I had been noticing swollen, warm joints- but always hoped it really wasn't there! My husband would tell me- "It's her baby fat- not swollen joints"! Well, another set of eyes saw these hot, inflamed joints and referred her to All Children s Hospital for a Pediatric Rheumatologist Consult. I knew this place all to well- I spent every month here ...being poked with needles and getting IV's and sharing tears with my mom and Doctor's.
Our biggest fears were confirmed-- Hannah was diagnosed with Juvenile Rheumatoid Arthritis in September 2007. Bobby and I talked about treatment options- we both agreed we were NOT putting our baby girl on these nasty biologic drugs and settled for daily motrin to help control pain and inflammation. Little did we know- Hannah is super sensitive to medications and was not able to tolerate NSAIDs (non steroidal anti-inflammatory drugs). Meanwhile, Hannah continued to spike high fevers, get sick easily and even had mono. Each time Hannah gets "sick" - she also goes into a massive arthritis flare up. Severe stomach pain, loss of appetite and blood in stool made us start a new classification of drugs - DMARDs (Disease-modifying anti-inflammatory drugs). Two years later, we started giving Hannah weekly injections of Methotrexate. We knew this drug was not FDA approved for children but was could not refuse a treatment that 50- 70% of children treated with Methotrexate eventually improved. What parent wouldn't want their child to have a chance to be pain free and run around just like other children. Despite taking folic acid to help ease Hannah's side effects- she became sicker each week. It was so hard for me to give her this weekly injections that totally took away Hannah's spunk and thrive for life. Weekends were no longer family fun filled weekends. It changed our entire families life....We were not able to attend church, we skipped birthday parties at the last minute, and Hannah was in mommy's arms all the time- carried everywhere! Hannah's side effects included nausea, vomiting, mouth sores , loss of appetite and very, very tired. After 5 months of pure misery- we moved on to another new classification of drugs- BRMs (Biologic Response Modifiers). We choose to try Enbrel- "the miracle drug". My husband was very against Enbrel because of the cancer, especially lymphoma risks involved. We didn't have many other options to explore that were any safer....so we are taking the risk. Hannah currently gets Enbrel injections (50mg)twice a week. She is amazing and such a trooper! She tries not to let Mr. Arthur slow her down much. As we always get to hear from people- "awhh...she's too cute to have arthritis". Yes- I'm here to tell you...Kids do get arthritis, too!
So if it's not bad enough to raise a child with chronic illness of Systemic JRA and have rheumatoid arthritis yourself (since age 3). Our absolute worst nightmare is our reality! Our 7 year old son, Jake, was also diagnosed with Polyarticular JRA in February, 2010. My poor husband.... his wife and two precious children all have JRA!
I hate to even share this with each of you. I should have got Jake diagnosed much sooner than February, 8, 2010. I knew in my heart for about 2 years- but could not convince my husband that it was "real pain" Jake complained about everyday to me! Sadly, we thought Jake was trying to get attention like his sister or trying to be just like his Grandpa who he adores! I sooo remember many nights of tucking Jake in bed, praying and him ask me to pray for his back pain, shoulder pain and neck pain, just like Grandpa's pain. It wasn't until July 2009 at the JA Conference in Texas- that all my thoughts were 100% confirmed!
At the JA Conference, Jake was able to attend as a sibling who has JRA. During this conference, he complained about his chest, wrists, knees and ankles hurting. Again.....I ignored it because he is a boy, an active boy! Those of you that know him well-- have you ever seen Jake slow down? Well, he did slow down, break down in tears as it was bedtime in this hotel in Texas. I turned the lights on, aggravated because it was past bedtime and said "show me what hurts". I'll never forget what I saw......hot, red, inflamed ankles, knees and chest! His chest was so swollen and he held his chest in tears, saying "it hurts, mommy"! I didn't know what to do....I broke down in tears and held him tightly! I knew as of this night...Jake has JRA, too! I didn't need a doctor to diagnose Jake....I knew without a doubt!!
Jake's 7th well check up with his primary physician- July 2009. Again....another set of eyes saw these red, hot, inflamed joints and made another referral to pediatric rheumatologist. This time we decided to try someone new-- Shands Hospital in Gainesville. We had to wait 6 months for an initial consult visit. Ohhhh...so well worth the 6 month wait! (We could not be any happier with Shands Hospital under the care of Dr. Elder and Dr. Modica) I was able to keep a closer eye on Jake's joints and complaints while we waited for our rheumatology appointment in "The Swamp"! Dr. Modica and Dr. Elder both examined Jake from head to toe and never gave us another explanation, but asked we run some labs, do a MRI of wrist and follow up with a cardiac thoracic surgeon and ophthalmologist. As of February 8, 2010- all tests and appointments were done and Jake was officially diagnosed with JRA- Polyarticular type. I wasn't shocked- like I said...I knew in my heart without a doubt Jake also had JRA, just like his sister, mom and Grandma! We also began Methotrexate, mobic and leucovorin for Jake on this day!
As we shared the news with Jake- he wondered if he would have to do shots like Hannah and Mommy? Hannah on the other hand- was jumping up and down and was thrilled that her brother joined the "arthritis club" with us. You can only imagine what it is like in The Sloan house on Friday nights- "Injection Nights"!! It didn't take long and Jake learned that the "arthritis club" is no club anyone should be a member of, especially children!
Needless to say, it has been a rough 7 months. Jake is now being treated with monthly IV-Solumedrol (steroids), Predisone (20mg)daily, Enbrel injections (50mg) twice a week, Methotraxte injections (25mg)weekly and Clinoril (150mg) twice a day, Leucovorin (5mg) weekly and physical therapy/Aquatics three days a week. He has severe neck,back and jaw pain as well as joint pain in his hands, wrists, fingers, knees, shoulders, hips elbows, ankles and toes.
We have learned that there is about 235 siblings across the country who have JRA, too. Yes- I am going to be a firm believer that genetics is a strong link in our family! Until you walk in these shoes....you are clueless how this disease affects your child and entire family! I will share other Blog stories about a true picture of what life is really like for the "Sloan Siblings Living with JRA"!