It all started August 22nd, 2011. Six days after Kandis' 2nd birthday.
The morning of Monday August 22nd I went in to Kandis' room, expecting her to greet me - jumping up and down in her crib like every other day. I found her sitting there looking very unhappy. I lifted her from the crib and set her on the floor. She immediately began crying, almost panicking, and wanting back up. I grabbed her and carried her to the living room, thinking she was just feeling under the weather. After half an hour of sitting on the couch, Kandis finally got up to walk.
This routine continued the entire week, carrying her to the couch, with every episode gradually getting longer and longer. And her walking getting harder and harder. My final straw was on the following Monday, when she could no longer walk for a full 4 hours after waking up. I had to take her to her doctor, as this clearly was not getting any better.
The appointment was made, and we were seen by her family doctor on Thursday September 1st. I was told that it was growing pains, nothing to be done about it, and to come back in a month if it was not better. In my heart, I KNEW there was something wrong with my girl. Something bigger than mere growing pains. I hopped on the computer that night and saw that her symptoms were completely in line with those of Juvenile Arthritis, and nothing like those associated with growing pains. I did not want to get worked up, but I had already self diagnosed her - Juvenile Arthritis.
What is Juvenile Arthritis?
Chronic childhood arthritis, sometimes referred to as juvenile rheumatoid arthritis or juvenile chronic arthritis, is quite different from adult rheumatoid arthritis. In fact, many people have dropped the word 'rheumatoid' and now call chronic childhood arthritis juvenile arthritis, or JA.
JA is defined as continuous inflammation of one or more joints lasting at least six weeks for which no other cause can be found.
Kandis woke on Friday September 2nd at 4:45am. She was quite obviously in unbearable pain. I gave her Tylonol and Advil to try to alleviate her discomfort, also to bring the fever that had spiked down. An hour after she recieved her medication, her condition had not gotten any better. I rushed her in to the Emergency Room and demanded my kid be seen. FAST. Her knee was the size of a tennis ball - this was certainly "growing pains", right?..
We were quickly seen by a pediatrician, Dr. P. Who confirmed that it was most likely, indeed, Juvenile Arthritis. Kandis was put on her first medication, Naproxen. It helped take some of the swelling down, but the pain was still there. We were referred to a rheumatologist in London, and awaited to be given an appointment. While we waited, our family traveled to Sudbury to visit Ron's brother and sister-in-law. We thought the time away would be good for us. However, with Kandis' condition being so severe, we found ourselves just as stressed as if we had stayed at home. The reality of having a child who is unable to walk (by then, there was no longer an amount of time in the morning that she could not walk, it lasted all day) is that you now have to carry them. Ron and I carried Kandis around for over a week straight. We finally got a call on Saturday September 17th that there was an opening to see Kandis on September 19th in London. Finally.
We traveled down to London and met Kandis' Pediatric Rheumatologist, Dr. Berard. She was very concerned with how swollen Kandis' joints were. I was expecting her to say "Arthritis" right away, but the next words she spoke shocked me in a way I have never known before. Cancer. Holy crap! My 2 year old daughter was scheduled to receive a bone marrow tap for Leukemia. She admitted us to the hospital immediately and our journey to official diagnoses began. That night, Kandis was woken up every 4 hours for assessment. I did not sleep.
The next few days were filled with ultrasounds, heart echos, eye exams, blood work, and of course the bone marrow tap. Finally, Kandis was diagnosed with Systemic-Onset Juvenile Idiopathic Arthritis.
Systemic-Onset Juvenile Arthritis
Systemic-onset juvenile arthritis is less common but frequently a more severe form of JA. It occurs in about 20% of children with JA, affecting boys and girls equally. It usually involves many different joints. Children with systemic-onset juvenile arthritis have spiking (rapidly rising and falling) fever, which usually occurs once (or sometimes twice) a day, and a rash that frequently comes and goes with the fever. In addition, they often have swollen lymph glands, and enlargement of the liver and spleen. They appear listless and unwell during the fever (most often in the late afternoon or evening), only to brighten up by the next day as their temperature returns to normal. When fever in systemic JA persists for several weeks, the child will be weak, lose weight and may become pale from anemia (a fall in the level of hemoglobin in the blood). Flares that last a long time may also interfere with growth, although the growth usually improves as the child's condition improves. Inflammation of internal organs may cause stomach pain or affect the heart or lungs but will not cause permanent damage.
In the early stages of systemic JA, there is sometimes no sign of joint inflammation. This may make it a very difficult disease to diagnose because there are many other illnesses that also cause a fever and rash in children. Therefore, many tests are done. The arthritis usually appears within the first six months after the start of the fever, and usually persists, even when the fever settles. The arthritis may be mild or severe, and may involve just a few, or many joints. However, even severe forms of arthritis sometimes go into remission within a few years. If the arthritis does not go into remission, it will follow a pattern of 'ups and downs' that is different for each child. In most cases, the pattern will gradually become less severe. Occasionally, as with all forms of JA, flares may occur after the disease has been inactive for a long time.
After the diagnoses of JA, Kandis was put on more medications:
Prednisone: an immune suppressant. It is used to treat certain inflammatory diseases and (at higher doses) some types of cancer, but has many significant adverse effects (ex. weight gain, facial swelling, depression, stretch marks, and insomnia).
Methotrexate: used in treatment of cancer, autoimmune diseases, ectopic pregnancy, and for the induction of medical abortions. It acts by inhibiting the metabolism of folic acid. It is used as a treatment for some autoimmune diseases including: rheumatoid arthritis, psoriasic arthritis, and lupus. Although methotrexate was originally designed as a chemotherapy drug (in high doses), in low doses methotrexate is a generally safe and well tolerated drug in the treatment of certain autoimmune diseases. Because of its effectiveness, low-dose methotrexate is now first-line therapy for the treatment of rheumatoid arthritis.
To start, Kandis received 8mL of Predisone orally twice a day. And 0.3mL of Methotrexate injected once a week. She was also put on Folic Acid, Vitamin D, and a Multi-Vitamin to help her body heal. I give her all of the medications, including injecting the Methotrexate into her arm once a week. After we were discharged from the hospital on September 23rd, we were referred to a physiotherapist at the Arthritis Society, where Kandis goes for physio once a month. She was recently fitted for a splint for her left arm because, in addition to arthritis, she also suffers from Tenosynovitis.
Tenosynovitis is the inflammation of the fluid-filled sheath (called the synovium) that surrounds a tendon. Symptoms of tenosynovitis include pain, swelling and difficulty moving the particular joint where the inflammation occurs.
On December 21st, Kandis went in to receive 6 steroid, and 3 tendon injections of Cortisone (
Cortisone a steroid hormone. Cortisone suppresses the immune system, thus reducing inflammation and attendant pain and swelling at the site of the injury.). She was put under anesthetic to keep her pain-free. The procedure took about an hour to complete, and she woke up happy and thirsty. We were relesed from the hospital at 5pm that evening. Kandis was still feeling a little dopey from the medicine, but her vitals were good, so we were allowed to leave. Fifteen minutes into the ride home, Kandis started whining. We figured she was tired and would go to sleep soon. Well, by the time we reached Cambride, Kandis was screaming in pain. This certainly was unexpected - Dr. Berard ensured me Kandis would only need to take it easy in the evening and could return to daycare the next day. When we got home, Kandis was in extreme pain. She was literally in as they say, "a world of pain". She was rolling around and yelling, almost like a totally different person. I gave her Tylonol and tried to keep her calm. Almost an hour went by, and there was still no change in her situation. We decided to take her to the Emergency Room. We were placed in a room around 11:00pm, and finally seen by the doctor at 1:00am. She could see Kandis was in a substantial amount of pain, and when I told her about the injections, she knew why. Kandis was experiencing a very bad reaction to the Cortisone. She explained that when Cortisone reacts in the body, it crystallizes and expands. I could not even imagine how painful that would have been. The doctor gave Kandis Advil, Tylonol, and Codine. We took our poor girl home and she fell asleep in my arms.
Since the injections, I have seen an improvement in Kandis' joints and movement. Was it worth the pain? I don't know about that. However, we have been able to cut back the Prednisone to 4mL twice daily. We are hoping to reduce it more to 6mL only once daily, but that will take months, because Kandis' body is dependent on her medication.
We are currently in the process of applying to Assistance for Children with Severe Disabilities (ACSD). This is an organization that will help cover some of the costs of gas, medicine, vitamins, medical supplies, etc. that we face. The next step in Kandis' journey is to get her on to a drug called Tocilizumab. It requires us to travel to London every 2 weeks for an intravenous infusion. The drug will hopefully put Kandis' arthritis into medical remission. However, we are having monetary trouble receiving it - the cost of the drug is $25,000 a YEAR. We have been turned down by Manulife Financial, where Ron's work benefits are. But we are hopeful that ACSD will give us funding for this important medicine. If all other means are unable to supply us the money, we will have to go to the drug company and ask for them to sympathetically give us the drug.
In the past 6 months I have watched Kandis change. Her face and tummy are swollen up from the Prednisone, she has gained weight, her height has been hindered, and her movement limited. But somehow, regardless of her pain, she has continued to be the happiest little girl I know. She manages to put a smile on my face, no matter how I'm feeling. Every single day I am thankful to have her here with me. She is the light in my life, and she is what keeps me going. I am and will continue to teach Kandis that she can do whatever it is she puts her mind to. I am determined to raise her to believe that, just because she has arthritis, does
not mean she has to sit around and miss out in life. Whether it is dance, hockey, soccer, karate, gymnastics - WHATEVER she wants. We will NOT let arthritis win. My little girl is SO unbelievably strong, I just know she is going to be victorious.
