Tuesday, December 28, 2010
From the outside looking in, you can't understand it. And, from the inside looking out, you can't explain it.
Our family had the pleasure to join Camp Boggy Creek's holiday party in December. It was here that I read something that I can totally appreciate and it sums everything up. "From the outside looking in, you can't understand it. And, from the inside looking out, you can't explain it." That is how I feel when a friend or family member or school personnel says, "but they look so healthy and are so happy". I find it very hard to explain to someone what JRA is and how it is more than just achy joints! A friend recently asked, "what does Hannah's liver have to do with her arthritis"? I'm getting a bit drained and almost don't have the energy to explain....
Another day in the swamp for Jake on December 14th. Hoping to get another dose of Remicade/Solumedrol to get him feeling good for the holidays. Jake's rheumatologist took the extra time to talk with Jake today. Jake told her on his own that he hurts all over and wants it to go away. Dr. E looks at Jake's joints,hears his jaw and neck popping and listens to mom about his recent chest pains, increased joint pain and CRANKINESS! I didn't have to explain to Dr. E about Jake being miserable-- he was indeed miserable today at Shands. Dr. E even told him to "be nice to his mom, it's not mom's fault and that your mom is trying really hard to help you". So today's game plan was to increase Jake's Remicade and to schedule his next Remicade IV in 3 weeks rather than 4 weeks. Today we also added another pain med (toradol - he got as an infusion). We also got a prescription for Tylenol 3 with codeine (prn)to use on Jake's bad, bad days. . To top it off- we added his Enbrel injections back! I didn't even know you could take Enbrel and Remicade at the same time! Jake was not thrilled to hear he's back to 4 shots a week and continue his Remicade infusions. At this point-- whatever it takes to get him feeling better- I'm willing to try!
But O My.....how much more medications can a little guy take?
Since our experience with the TMJ Doctor was not a positive one-- we will be exploring another TMJ specialist who can do the steroid injections into the TMJ joint for Jake. Jake's jaws are getting bad again- clicking, popping, shifting and locking! There are some days...Jake warns me, "mom, I'm not going to be eating today because my jaw won't open". It breaks my heart to watch Jake grab his jaw and scream "ouch" as it locks on him with no warning!
Jake's recent chest pains are from his costochondritis. The poor kid has no break where his arthritis has affected him! Not as common- but yes Jake has inflammation and severe sharp pain in the costosternal joint. People describe the pain that mimics of a heart attack. He also takes clinoril twice daily which is suppose to help especially with spine inflammation. These are a few of the things people can not see from the outside looking in. So when Jake and Hannah's PE coach didn't want to follow 504 plan-- and Jake comes home talking about significant chest pain and he had to run to play game with friends........ Again, from the inside looking out-- how can I explain it so he understands??? Does he really want to hear that his toes look like sausages? His ribs are so swollen it is causing him severe chest pain? His wrists are so bad that he can't unzip his own pants some days? And he selects which foods he eats because his jaw may be locked during lunch? Or he may have stomach cramps and nausea due to his medications? And he has no appetite and, tired and feels like vomiting because he took his methotrexate (chemo) 2 days ago? Meanwhile- Jake attends school everyday despite how he feels, or how long it takes him to walk without bending over like a old man. He manages to maintain his grades (most all A's) despite how much pain he is in or days he has to miss school because of doctor/medical appointments, infusions. And if anyone asks," How are you Jake? " The answer is fine. My kids have learned already in life- very few people really wants to know how you are feeling, and they most likely don't understand, so why share!!
Hannah...... we awaited to hear from her doctor regarding her abdominal ultrasounds that were done in November. We weren't surprised- her liver, spleen and lymph nodes are enlarged. We did the next step and saw a pediatric GI MD. It was way past due- but as a mom-- I was not wanting to put Hannah through the "work up" at such a young age. We tried no fruits/veggies diet with high fiber foods and a very high dosage of Prevacid for a few weeks- no positive results. Hannah continues to complain a lot about her tummy, and has awoken many nights crying with severe abdominal pain. Next week- Hannah will have the pleasure to have a EGD (upper endoscopy with biopsy) and colonoscopy. I'm not looking forward to a two day prep with a 6 year old. How will I ever convince her to drink magnesium citrate and no foods for 2 days prior to procedure? Won't dulcolax and enema's be fun for her.... Do I even attempt to explain procedure to her or just hope the anesthesia does its job? The GI doctor was outstanding, and truly put me at ease. He believes Hannah has crohn's disease, but none the less systemic JRA affects the organs as well. Dr. K explained that if it is just her systemic JRA or if it is crohn's disease-- the treatment is the same. REMICADE -A drug that we are all too familiar with! Hannah's rheumatologist had just talked to us about starting Remicade or maybe Anakinra (depending upon her eye status and GI results). Not sure what to expect from the colonoscopy and EGD. I have accepted that Hannah will have to start Remicade, too. Trying to keep an open and positive mind- praying for the best of what can be possible! We will wait and see what is next for Hannah in her JRA journey!
Am so thankful for Camp Boggy Creek and my parents (and their home in TN). These are two places where Jake and Hannah can forget about what they have and be a kid! Camp Boggy Creek is a special place-- Thank you Camp Boggy Creek and donors for building dreams for Jake and Hannah and many others with chronic illnesses. I have a hard time explaining to others what a piece of our life is like on a daily basis- but friends at camp Boggy get it without saying a word! Again, "From the outside looking in, you can't understand it. And, from the inside looking out, you can't explain it".
Saturday, December 4, 2010
Fall is for fun festivities not fallbacks...... Trying to make things easier on me, decided to have Jake and Hannah's Rheumatologist appointments at Shands on the same day. Not sure if that was easier on me or not.....my head is just now stopping to spin!
Many of us living each day with a chronically ill child have days or weeks that are overwhelming. This was my week to be on overload! While Jake is hooked up to the Iv pole- getting his solumedrol and zofran- I try to explain Jake & Hannah's past 30 days to Dr. Elder and her nurses. 30 days- that shouldn't be difficult. Meanwhile, Jake and Hannah had special surprise visitors. Their family pals from Camp Boggy Creek came to visit Jake and Hannah in the infusion room. Positive distractions are always nice, but today Jake was in no mood for visitors. He was mad to be hooked up to IV's and not down on the floor playing board games with his pal, Roj.
So after Dr. Elder gathers info, reviews current labs and examines Jake from head to toe, she shares that his aggressive Enbrel/Methotrexate/Solumedrol/clinoril treatment was not affective. We have reached the point to move on and try another biologic agent- Remicade. Thoughts are racing through my head....knowing long term health effects are unknown, the increased risk of cancers, and the toll it will take on Jake's immune system. Besides a miracle and healing from God, we don't have any other better options to help Jake to feel better and try to get this disease under control. He has active joint pain/arthritis literally in every joint in his body (even between his ribs, jaws and his toes). On the positive note, Jake was pleased to know that he will have 3 less shots a week (Enbrel) once he starts Remicade infusions.
Dr. Elder moves onto kid #2- Hannah. She is impressed with a photo of a recent rash, notices swelling on several joints, swollen lymph nodes, sensitive jaw and tummy. She is mostly concerned about Hannah's eyes and the status of her internal organs. Hannah has always had a history of increased joint pain leads to severe abdominal pain. Hannah has been awakening at night, screaming crying about tummy pain. Dr. Elder discusses the need to consider changing Hannah's medications too. Choices include Anakinra (kineret) or Remicade. Both of these are more effective treating systemic JRA. So we decided to wait until next eye appointment ( Hannah currently being treated with Alrex steroid drops and is seen every 2 weeks by ophthalmologist) and have abdominal ultrasound. Meanwhile, we increased Hannah's Enbrel to 75mg a week (3 shots a week) and discontinue Mobic and add Celebrex 100-200 mg daily. Discussed doing a MRI of her jaw, but will wait until she shows signs of difficulty eating or weight loss.
As Jake finishes his infusions, I sit next to him and think about all the things that need to happen within the next few days. I very quickly became overwhelmed! Jake is moving onto Remicade, I start Rituxan myself tomorrow and Hannah increases Enbrel and starts Celebrex as we wait for more answers on her eyes and abdominal issues. Not sure if it is wise to have Jake and Hannah appointments together on the same day. Another day in the swamp...... a treat to see Grace and Raj, our Boggy Creek friends!
Wednesday, September 29, 2010
Today was just another day......a day in the life of "The Sloan Siblings Living with JRA." This morning Jake and I start our day off with reading books in the school library and taking AR tests on the computer. Jake wanted to meet his class goal so he can participate the AR Pizza Party! Yes- Jake met his goal before the end of the month! Now....off to Shands Hospital we go! It was a good 3 hour road trip this morning. A special friend had surprised Jake with a DS game and we even stopped at Jake's favorite store in Ocola- Gander Mountain. As we get close to Gainesville- we received a text message that Gavin(one of Jake's JRA friends) and his mom were also at Shands today. Jake was excited- a entire day just with mom, a little shopping at Gander Mountain and was able to play his DS for 3 hours in the car!
The fun begins to slow down as we enter the infusion room. Not always pleasant to see a room full of children all hooked up to IV poles. Jake is always brave- despite what the outcome may be. The nurses greet us both and talk among each other as to who is going to start Jake's IV today. This is not a easy task for Jake or the nurses. Each one of the nurses remember Jake's veins and situations that happen every month. So....we got the video game picked out and it's time to start the IV. As the nurses search all over Jake's left and right arms, hands and then ummmmm.....which should we try! Jake gets a bit scared- but never sheds a tear and is so brave as they dig deeper and deeper and pull and reinsert the needle over and over trying to get a good vein to corporate! Finally- we cheer as the nurse successfully gets Iv started and Jake gets back into the video game!
It wasn't very long and Jake's vein had a "blow out". He tried to tell me and a nurse that it hurt, hurt really bad! Within a few minutes we understood why it hurt as his arm was red and HUGE around the entire IV site! So another nurse was brave to attempt a different vein. Jake did not want any part of this- he was ready to go home! The nurse assured him we are going to start this IV even if we have to put it in his foot! After holding Jake down- and a little bit of luck another IV was started!
Jake tried to focus on his video game as we wait for his nurse and rheumatologist to make rounds. You always wonder what is going to be the game plan today? When have we determined treatment isn't successful and ready to move on to another drug! We know all too well that there is not a easy, definite answer as to how to treat JRA. Jake's doctor talks to him and looks at all his joints and decides we need to add more Enbrel. Jake's eyes light up, the video game on pause- and says to his doctor, " another shot- not on church day". Not only are we adding more Enbrel but also increasing his Methotrexate. Jake shakes his head and says, "no". Jake is old enough to understand that he feels so badly on weekends and days after his methotrexate shots that he is not happy about hearing that he is increasing his dosage!
So the worse part of the day was over.... now the ride back to Lakeland. It wasn't very many miles down the interstate and Jake tells me he doesn't feel well. yup....He was telling the truth, he did not feel well! As it was pouring down rain, Jake is throwing up all over in the back seat of my car. Anxiously waiting for a rest stop or exit to get off the interstate. When I am able to open his car door- he is shaking , crying and apologizing that I am standing in the rain and he made a mess in my car and all over himself. We cleaned up the best we could and headed back on I-75. Now Jake had no clean clothes , so we couldn't stop for a bathroom break. We waited till we came to the Green Swamp....pulled off a dirt rode and did the best we can!
As Jake is getting ready for bed, he shares with me his thoughts. Jake says, "Mom, I'm ready to go to Heaven". I said "why would you say that, Jake"? He says" I'm ready to go to Heaven and have God take away all my pain and be done with my arthritis". I was speechless as tears rolled down my face. Jake says" Mommy, I'll only leave you for a day". "Just a day in Heaven to be free of all my pain, then I'll come back to you". It's not fair that my eight year old son is ready to go to Heaven because he wants the life of living with JRA to be over and live pain free!
Yes -today was just another day living and raising two children with JRA! Please continue to pray for Jake and Hannah and the other 300,000 children who all suffer from JRA. I'm not ready to have my eight year old son go to Heaven to just be pain free! He needs a break and an opportunity to just be a kid and enjoy life!
Sunday, August 22, 2010
Most of our friends and family know..... my husband and I have two children with Juvenile Rheumatoid Arthritis (JRA). These are the same people who often think of their own Grandma with arthritic hands and knees. When they see our children- there are no symptoms that can be seen from the outside. So does this mean Jake and Hannah have minor joint pain and all is good? Is mom spending too much time educating teachers and helping other families who are also dealing with JRA? Is it reasonable that my husband is working two full time jobs to cover medical expenses?
JRA affects every child differently, including Jake and Hannah. . JRA is a autoimmune disorder, which means that the body mistakenly identifies some of its own cells and tissues as foreign. The immune system, which normally helps to fight off harmful, foreign substances such as bacteria or viruses, begins to attack healthy cells and tissues. The result is inflammation- marked by redness, heat, pain and swelling. Non joint pain symptoms include fatigue, poor sleep, decreased hunger and weight loss. Ok- so that is the easy stuff to understand and treat.
Jake and Hannah have two different types of JRA. Hannah has Systemic JRA which affects the entire body ( internal organs, skin and joints)- including internal organs such as: heart, liver, spleen, lungs and lymph nodes. High spiking fevers that may last for weeks or even months, skin rashes that come and go are also symptoms of systemic JRA. Swollen lymph glands, enlarged liver and spleen are also affected. A systemic JRA child looks and feels very ill, especially during a flare up. Those of you who have seen Hannah during a bad flare up- you saw her listless and unwilling to even walk or talk. The inflammation of internal organs causes Hannah severe stomach pain.
Jake has a different type of JRA- Polyarticular JRA. This type of JRA affects five or more joints. Causes problems as swelling joints, pain and limited range of motion. It usually affects the small joints of the fingers/hands and weight bearing joints (knees, hips, ankles, and feet). It can also affect the TMJ or jaw joint and cervical spine (neck).TMJ arthritis can lead to limited jaw opening and affect chewing as well as cause abnormal growth of the jaw leading to small chin and a crooked mouth opening and smile. Arthritis in the neck can cause instability or bony infusion of the cervical spine. Minor trauma can easily cause spinal cord injury. Unfortunately, Jake has active arthritis in every joint in his body. His neck, jaw, chest, toes and knees being his worse!
So why does every day with Jake and Hannah vary from day to day and even through the day? JRA has unique features which can affect Jake & Hannah's growth (accelerated growth due to inflammation) eye problems (uveitis,iritis, iridocyclitis, and anterior uvetis) and the UNPREDICTABILITY of everyday life! Jake and Hannah have ups and downs all the time. Our life has to be flexible...we don't know what the afternoon may bring us! A mild infection, cold or flu may cause a massive flare up and their bodies may not be able to fight off a common cold. None of us like our children to be sick-- but having two children with compromised immune systems, taking medications that suppress their immune system and not having the ability to fight a infection is SCARY! Jake & Hannah's Biologic medications have to be put on hold during a illness- which lessons the opportunity to manage the disease.
I strive to make life as normal as possible. Jake and Hannah attend a regular school , participate in extracurricular activities such as: soccer, dance and karate, cub scouts, and church events. We take lots of hot baths to help with morning stiffness, and joint pain. We use heated electric mattress pad covers with heated blankets at night.We use neck pillows while riding in the car, use hot or cold packs to help relieve pain when unbearable. Jake and Hannah have physical therapy/ aquatics 2-3x a week to strengthen & maintain joint mobility. (Doing these exercises at home require total support from me.) They both take a variety of aggressive drugs to help control the disease and help prevent permanent joint damage. Jake has monthly IV's at Shands Hospital, Enbrel injections twice a week, Methotrexate injection once a week and seven other oral medications. Hannah is currently taking Enbrel injections twice a week and three other oral medications to manage her disease. Although, we do have medical insurance...Enbrel itself is a expensive medication ($4,000 a month for Jake and Hannah). SIDE AFFECTS are horrible!!
Because many different treatments are used- it takes a team of health care professionals working together to manage their disease. These specialists consist of pediatric rheumatologist, nurse practitioner, physical therapist, ophthalmologist, neurologist, cardiologist, dentist and primary physician. On average-- we travel to Gainesville to Shands Hospital or St Petersburg to All Children s for MRI's,bone scans, eye appointments, IV's , doctor check ups at least 3-4 times a month. We have laboratory tests routinely to check for toxicity, liver status and monitor blood counts. Ohh yes...and that is not always a easy task! Between bad, rolly veins and scar tissue build up..it is always a few attempts before getting successful blood draws. We've had to come back the next day several times to try again and again ... (after we have pumped fluids and played to get optimal blood flow) And did I mention Jake and Hannah cant get any live vaccines (i.e., MMR, or chicken pox or flu vaccines with live viruses)while on these biologic medications. I didn't have a choice to vaccinate or not! Why would I not want my daughter or son to have all required vaccines for school? Yes- I get to worry about if a child has chicken pox or Tb outbreak? Will the teacher notify me? Or do they simply think arthritis is just like Grandma's arthritic hands and no other considerations?
Just to mention a few side effects we deal with after every injection. Some of Jake and Hannah's side affects include; nausea, vomiting, mouth sores, diarrhea,hair loss, reduced resistance to infection, mood swings, increased/decreased appetite, low white blood cell count, and liver irritation.Long term effects of these Biologic medications are unknown. We do know there is a increased risk of cancer, especially lymphoma. So as I inject my children with these medications twice a week- I then get to watch Jake and Hannah deal with these side effects as we try to control the immune system/disease.
My husband has significant financial stress due to the high medical costs involved with taking care of his two precious children and wife who all suffer from JRA. How can we refuse treatment or decline medications due to finances? We do what we have to do to pay for our medications and treatments involved in caring for two chronically ill children. Bobby works two full time jobs! That's hard on him, but he also isn't able to be with his family as often as we wished! Returning back to my career doesn't seem to be a option anymore. Who would be there to pick up a sick child from school, who's traveling back and forth to all these out of town medical appointments? I am thankful that I can be here for Jake and Hannah as they go up and down in their JRA Journey! There is no doubt.... Jake and Hannah are my HEROS!
Monday, July 12, 2010
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"!