It all started with a little limp.
Our journey with Juvenile Idiopathic Arthritis started a couple weeks before Esella's second birthday, in November 2010. Katie, Esella's mom, noticed that she was limping one morning…but it came and went over the next couple weeks. Katie thought she probably pulled a muscle running around and assumed it would go away.
Then the day before her birthday, November 27th, 2010, Esella awoke with a prominent limp. Justin, Esella's dad, realized that she was not fully extending her right knee during her morning diaper change. When he tried to extend it for her, she cried out in pain. We put her on the ground and lifted her pants to find a very swollen right knee.
It was a Saturday but luckily our pediatrician's office was open, so in we went at 9:30am. The Doctor we saw that day suspected Esella had a condition called Transient Synovitis. Esella had just gotten over a mild cold and Transient Synovitis is thought to be triggered by illness. Basically it is short term swelling/pain in a joint...however it is typically found in the hip. After a set of x-rays revealed a normal knee joint with the exception of inflammation and fluid build up, we were told to give her motrin around the clock (three times a day) and have a follow up the next day.
However...the more we read the less we thought this was a harmless little bout of transient synovitis. There were too many more severe things it could be. So we asked Esella's Pediatrician for more testing.
Over the next two weeks Esella had several doctor visits (including two with a pediatric orthopedist, whom our pediatrician immediately referred us to), another set of x-rays, and more lab work than a two year old should ever have to endure. After the initial 10 days being on motrin (which did help a bit) we were told to stop it to see what would happen. THIS is what happened:
Click Here to See Esella's Limp
It was heartbreaking watching our daughter hobble around like an old lady.
It was heartbreaking watching our daughter hobble around like an old lady.
Our pediatric orthopedist referred us to Stanford’s Pediatric Rheumatology department when the Motrin did not eliminate the swelling. We got in about two weeks later.
After a very long (almost 2 hours) appointment they diagnosed her with Oligo-articular JIA. This type of JIA effects 4 or less joints (in addition to her knee the doctors noticed a swollen knuckle on her right hand) and typically effects young females. They prescribed some medication to take daily and recommended she have a cortisone shot in her knee to eliminate the inflammation. This required that Esella be put under anesthesia. She underwent the procedure on January 11th 2011 just 8 days after her baby brother was born. Here she in her hospital gown.
The procedure itself went well, but Esella did not come out of the anesthesia well and it was heartbreaking to watch our child go through that. The injection was successful at eliminating the inflammation in her knee, however the short time her knee was inflamed resulted in her right leg growing about 1cm longer than the left, and caused a decrease in the range of motion as well as a decrease in strength in her right leg.
Esella began physical therapy in March to help strengthen her right leg and increase her range of motion.She did a few months of PT and "graduated" and we now do stretching and strengthening exercises at home. She still has difficulty going down the stairs with her left foot first (bearing all her weight on her right knee) but we are working on it and she slowly makes progress!
Esella's right middle finger continues to be swollen and is not responding to the medications as we had hoped. In addition it appears that her right pointer finger is also affected and at her last appt (in August) they confirmed that her pointer finger on her LEFT hand is also effected. Justin and I have noticed puffiness on and off in six fingers total now, three confirmed by the doctors.
In May we began administering a low dose chemo medication called Methotrexate once a week to hopefully suppress her immune system enough to stop it from attacking her joints.We started out giving this medication orally, however after a 12 week period we did not see the level of improvement we were hoping for, so in September we doubled her dose and began giving Esella injections.
In addition to her leg and hand, we have to have Esella's eyes checked every 4 months by a pediatric ophthalmologist. Why? Because it is not enough that this disease attacks the joints, but it also can attack the eyes. Children with certain types of JA are at an increased risk of developing a condition called UVEITIS which can cause blindness and typically has no symptoms until the damage has been done. Therefore frequent visits are very important.
The procedure itself went well, but Esella did not come out of the anesthesia well and it was heartbreaking to watch our child go through that. The injection was successful at eliminating the inflammation in her knee, however the short time her knee was inflamed resulted in her right leg growing about 1cm longer than the left, and caused a decrease in the range of motion as well as a decrease in strength in her right leg.
Esella began physical therapy in March to help strengthen her right leg and increase her range of motion.She did a few months of PT and "graduated" and we now do stretching and strengthening exercises at home. She still has difficulty going down the stairs with her left foot first (bearing all her weight on her right knee) but we are working on it and she slowly makes progress!
Esella's right middle finger continues to be swollen and is not responding to the medications as we had hoped. In addition it appears that her right pointer finger is also affected and at her last appt (in August) they confirmed that her pointer finger on her LEFT hand is also effected. Justin and I have noticed puffiness on and off in six fingers total now, three confirmed by the doctors.
In May we began administering a low dose chemo medication called Methotrexate once a week to hopefully suppress her immune system enough to stop it from attacking her joints.We started out giving this medication orally, however after a 12 week period we did not see the level of improvement we were hoping for, so in September we doubled her dose and began giving Esella injections.
In addition to her leg and hand, we have to have Esella's eyes checked every 4 months by a pediatric ophthalmologist. Why? Because it is not enough that this disease attacks the joints, but it also can attack the eyes. Children with certain types of JA are at an increased risk of developing a condition called UVEITIS which can cause blindness and typically has no symptoms until the damage has been done. Therefore frequent visits are very important.
So what does this mean for Esella’s future? We really don’t know. The doctors are hoping that since we caught it so early (thanks to wonderful medical professionals and mommy and daddy instincts) that we will be able to get it into remission with medication. The most important thing is to get it under control so that she does not have any issues with her growth development, which the doctors seemed very positive we will be able to accomplish. Other than that, we just watch and wait.
Thank you so much for reading Esella's story. You can read updates about Esella's JIA on this blog.
Esella with her baby brother Everett born 1-3-2011
