Sunday, August 22, 2010
A Day in the Life of a Sloan Sibling.....
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!