Poetry and Storytelling by Kai
WORDS BY KAI. This site is the home of creative expression fueled by passion and inspired by the sparks of a my starlight muse. On these pages you will find my creative voice in lines of poetry, thoughtful essays and commentary, creative storytelling, and in an array of beautiful words to inspire the logophile in us all.
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Directory - Personal Narrative
Did You Know Kids Get Arthritis Too?
My daughter Allie is nine years old and spends her days daydreaming, drawing glittery unicorns, colorful ponies, and beautiful fairies, or building epic pink and purple Minecraft kingdoms with her brother. She is always smiling and laughing and simply enjoying her childhood like any other girl her age. But behind her bright smile is a girl who has never known life without pain. Behind her sweet demeanor is a badass warrior fighting a war that people can’t see or even understand. My brave and strong 9 year old daughter is one of 300,000 children living in the US today with an autoimmune disease known as Juvenile Idiopathic Arthritis (JA or JIA). Today I am bringing her story out to help bring awareness that kids get arthritis too.
What is JIA
JIA is a group of autoimmune disorders that cause the body to mistakenly identify some of its own cells and tissues as foreign. The immune system attacks healthy cells and tissues resulting in inflammation that causes redness, heat, pain, and swelling. JIA is akin to Rheumatoid Arthritis in adults but is not the same. RA is homogeneous or one disease while JIA is a group of different types of arthritis. it’s believed that only about 10 percent of children have a disease that closely resembles rheumatoid arthritis in adults. JIA, unlike RA, may include a variety of symptoms, such as muscle and soft tissue tightening, bone erosion, joint misalignment and changes in growth patterns.
Types of JIA
There are several forms of JIA but for the purposes of this blog I will tell you about the two main forms.
Treatment
JIA is treated with anti inflammatories and disease-modifying anti-rheumatic drugs (DMARDs) like methotrexate and various biologic agents like Enbrel and Humira. These medications have brightened the long-term outlook for children with JIA. 30 years ago it wasn’t unusual for some boys and girls to end up in wheelchairs. That’s almost unheard of today due to these medications.
Cause
No known cause has been identified for most forms of juvenile arthritis, nor is there evidence to suggest that toxins, foods or allergies cause children to develop JIA. Some research suggests a genetic predisposition to juvenile arthritis, which means the combination of genes in the child may cause the onset of JA when triggered by other factors. The term Idiopathic means unknown.
Allie’s Story
Allie was 18 months old and had finally mastered the art of crawling. I was already chasing after a 2 year old boy so my days were spent corralling them in a gated living room to keep them out of the pantry and the toilets. One day I stopped to admire her new maneuver which involved using her arms to drag herself on her side. It was a crazy crawl and through my friends I discovered it was called an army crawl. What I didn’t realize initially was that children do the army crawl before they learn to do the real arms and knees crawl you typically associate with toddlers. Allie did it backwards. I shrugged it off and determined she was just an unconventional baby and would probably running soon enough.
Unconventional Baby?
One day I had her on the changing table to get ready for bed. I had diapered her and fit her arms through the sleeves of her footie sleeper. When I went to fold her legs into the pajamas I couldn’t bend her knees. They were stiff as a board. I wasn’t immediately concerned but over the next two weeks I discovered this issue every time I dressed her. I have been around babies my whole life and have never experienced this issue. Red flags exploded in my brain one night and I made an appointment with the pediatrician the next day.
Hysterical Mama on the Loose
Over the course of the next two months I was classified as an hysterical mother with a doomsday attitude. But I knew my baby and I knew her symptoms were not normal. Her army crawl slowly turned from a drag to a full stop. She just didn’t move herself anymore. I still couldn’t bend her legs easily and her knees were red and felt hot at times. She started running unexplained fevers and had turned from a happy baby to a fussy baby and finally to a lethargic baby. So I started to read and I read the entire Internet scouring for information on her symptoms. Up until then she was diagnosed with growing pains, behavioral issues and the common cold. I was not satisfied with any of these and one late afternoon I stormed through the doors at the pediatrician without an appointment and demanded to be seen. It was then that I brought up Juvenile Arthritis. The doctor capitulated and agreed her symptoms may be associated with this disease. He had no experience with JA and I was given the address to Arnold Palmer Children’s Hospital and told to present in the emergency room with the photocopies of files. I left his office and was checked into the ER two hours later.
Diagnosis
My daughter went through a battery of tests including blood work and a sedated MRI. By noon the next day her blood work confirmed the presence of antibodies of JA, a positive Rheumatoid Factor, and a high sedimentation rate which is the speed at which your red blood cells settle to the bottom of a tube of blood. An elevated rate indicates inflammation. My daughter was informally diagnosed with Oligoarthritis suspected in both her knees. We were referred to one of the only two pediatric Rheumatologists in the entire state, and at her first appointment her diagnosis was confirmed.
Treatment
Her initial treatment was Naproxen for inflammation, Methotrexate (a cancer drug), and a plethora of physical therapy and occupational therapy sessions several times a week. We were told that the Methotrexate would help her get into remission and stall the progressive deterioration. We were also told that Oligoarthritis could be outgrown so we prayed for the arthritis to only affect her knees. We could only provide the treatments as prescribed and just wait for remission. She was monitored every six months by the rheumatologist but her pediatrician became the main provider.
Remission? Could it Be?
At the age of 3 the doctor determined she had finally achieved remission and she was taken off Methotrexate and her therapy sessions ceased. At the age of 4 she went into a bad arthritic flare and soon after she was diagnosed with arthritis in both hips as well as her knees. She went back on Methotrexate. I clung to the number 4 because she was still classified as Oligo and could theoretically still outgrow it. By the time she was five that hope was shattered when she was diagnosed in both elbows. My daughter had Polyarticular Arthritis and this meant it was for life.
Life Today
Allie is now nine years old. She has arthritis in ALL of her joints. Both knees, hips, ankles, elbows, wrists, and shoulders. All toes and fingers. And at her last appointment she was diagnosed in her neck. She has been on several biologic medications to halt progression and minimize deterioration. Some worked, like the Methotrexate, and others like Orencia did nothing. She has experienced remission a few times but she remained medicated each time. Today she is on Methotrexate again and Enbrel to work alongside it.
My Fighter
My daughter has never once cried or complained of pain, she will deny it to your face, and she refuses to sit out of gym or get out of running or any other physical activity. She sits still for her shots and blood draws. She knows she has to take medication for pain but she doesn’t really understand what JIA is or that she even has it. She has never used it as an excuse to get out of anything or stay home from school or to not do her work. She wakes up stiff and she may take a long time to get moving but she has a smile plastered on her face because she’s excited for each day. She is the strongest girl I know and she fights every day to make sure her life is happy. There was only one time in her life that she stopped and she said she can’t. We were at Disney on a three park pass and on the third day at Epcot she stopped in Germany and said “Mama I can’t. I can’t walk anymore.” And she sat down on a curb and put her head in her lap and she cried. Her brother sat down next to her for support. I asked her if she wanted to leave and she adamantly declined. So Mama took off running for the front gates of the park to rent a stroller for her. She finished the park in it and when we returned to the hotel I put her in a bath and gave her the only thing I could. Children’s Advil from the gift shop. She was in a full flare but she declared that it wasn’t stopping her from going to the pool for the rest of the night. And so we did.
The Fight
Allie is one of 300,000 kids with arthritis in the US and every one of these kids are fighters and survivors. As parents we hope and we pray that awareness of this disease will bring a cure but we know that the lack of funding for research and the lack of practicing pediatric rheumatologists limit those chances. We are preparing our children for a lifetime fighting this disease but we never lose hope. Every single person who learns about this disease brings exposure to the fight. Every dollar raised brings improvements to the medicine and treatments available and every success by the pharmaceutical companies doing research brings us closer to a cure. So as parents we fight for kids and science and technology fights for us all.
A Note of Thanks
Thank you for reading this post about my daughter and all our arthritis kids. Your support is greatly appreciated and I hope you now have a better understanding about a disease that needs more awareness and exposure in order to help alleviate the pain and suffering of our children. The more people know that kids get arthritis too the better chance we have at improving our children’s quality of life.
Want to Know More?
If you would like to know more about Juvenile Idiopathic Arthritis please visit the Juvenile Arthritis Foundation at https://www.arthritis.org/about-arthritis/types/juvenile-arthritis/ or the Arthritis National Research Foundation at https://curearthritis.org/juvenile-arthritis/
What is JIA
JIA is a group of autoimmune disorders that cause the body to mistakenly identify some of its own cells and tissues as foreign. The immune system attacks healthy cells and tissues resulting in inflammation that causes redness, heat, pain, and swelling. JIA is akin to Rheumatoid Arthritis in adults but is not the same. RA is homogeneous or one disease while JIA is a group of different types of arthritis. it’s believed that only about 10 percent of children have a disease that closely resembles rheumatoid arthritis in adults. JIA, unlike RA, may include a variety of symptoms, such as muscle and soft tissue tightening, bone erosion, joint misalignment and changes in growth patterns.
Types of JIA
There are several forms of JIA but for the purposes of this blog I will tell you about the two main forms.
- Oligoarthritis Arthritis involves one to four joints and is the most common type of JIA affecting about 50% of all diagnosed children. Many of these children outgrow the disease provided the number of joints affected remains at 4 or fewer.
- Polyarticular Arthritis, is a severe form of the disease and affects 30% of diagnosed children. Poly means five or more joints are affected. It is a progressive disease. Proper treatment helps 50-70% of children with JIA experience periods of remission but this form is incurable and for life. If left untreated it can cause irreversible damage.
Treatment
JIA is treated with anti inflammatories and disease-modifying anti-rheumatic drugs (DMARDs) like methotrexate and various biologic agents like Enbrel and Humira. These medications have brightened the long-term outlook for children with JIA. 30 years ago it wasn’t unusual for some boys and girls to end up in wheelchairs. That’s almost unheard of today due to these medications.
Cause
No known cause has been identified for most forms of juvenile arthritis, nor is there evidence to suggest that toxins, foods or allergies cause children to develop JIA. Some research suggests a genetic predisposition to juvenile arthritis, which means the combination of genes in the child may cause the onset of JA when triggered by other factors. The term Idiopathic means unknown.
Allie’s Story
Allie was 18 months old and had finally mastered the art of crawling. I was already chasing after a 2 year old boy so my days were spent corralling them in a gated living room to keep them out of the pantry and the toilets. One day I stopped to admire her new maneuver which involved using her arms to drag herself on her side. It was a crazy crawl and through my friends I discovered it was called an army crawl. What I didn’t realize initially was that children do the army crawl before they learn to do the real arms and knees crawl you typically associate with toddlers. Allie did it backwards. I shrugged it off and determined she was just an unconventional baby and would probably running soon enough.
Unconventional Baby?
One day I had her on the changing table to get ready for bed. I had diapered her and fit her arms through the sleeves of her footie sleeper. When I went to fold her legs into the pajamas I couldn’t bend her knees. They were stiff as a board. I wasn’t immediately concerned but over the next two weeks I discovered this issue every time I dressed her. I have been around babies my whole life and have never experienced this issue. Red flags exploded in my brain one night and I made an appointment with the pediatrician the next day.
Hysterical Mama on the Loose
Over the course of the next two months I was classified as an hysterical mother with a doomsday attitude. But I knew my baby and I knew her symptoms were not normal. Her army crawl slowly turned from a drag to a full stop. She just didn’t move herself anymore. I still couldn’t bend her legs easily and her knees were red and felt hot at times. She started running unexplained fevers and had turned from a happy baby to a fussy baby and finally to a lethargic baby. So I started to read and I read the entire Internet scouring for information on her symptoms. Up until then she was diagnosed with growing pains, behavioral issues and the common cold. I was not satisfied with any of these and one late afternoon I stormed through the doors at the pediatrician without an appointment and demanded to be seen. It was then that I brought up Juvenile Arthritis. The doctor capitulated and agreed her symptoms may be associated with this disease. He had no experience with JA and I was given the address to Arnold Palmer Children’s Hospital and told to present in the emergency room with the photocopies of files. I left his office and was checked into the ER two hours later.
Diagnosis
My daughter went through a battery of tests including blood work and a sedated MRI. By noon the next day her blood work confirmed the presence of antibodies of JA, a positive Rheumatoid Factor, and a high sedimentation rate which is the speed at which your red blood cells settle to the bottom of a tube of blood. An elevated rate indicates inflammation. My daughter was informally diagnosed with Oligoarthritis suspected in both her knees. We were referred to one of the only two pediatric Rheumatologists in the entire state, and at her first appointment her diagnosis was confirmed.
Treatment
Her initial treatment was Naproxen for inflammation, Methotrexate (a cancer drug), and a plethora of physical therapy and occupational therapy sessions several times a week. We were told that the Methotrexate would help her get into remission and stall the progressive deterioration. We were also told that Oligoarthritis could be outgrown so we prayed for the arthritis to only affect her knees. We could only provide the treatments as prescribed and just wait for remission. She was monitored every six months by the rheumatologist but her pediatrician became the main provider.
Remission? Could it Be?
At the age of 3 the doctor determined she had finally achieved remission and she was taken off Methotrexate and her therapy sessions ceased. At the age of 4 she went into a bad arthritic flare and soon after she was diagnosed with arthritis in both hips as well as her knees. She went back on Methotrexate. I clung to the number 4 because she was still classified as Oligo and could theoretically still outgrow it. By the time she was five that hope was shattered when she was diagnosed in both elbows. My daughter had Polyarticular Arthritis and this meant it was for life.
Life Today
Allie is now nine years old. She has arthritis in ALL of her joints. Both knees, hips, ankles, elbows, wrists, and shoulders. All toes and fingers. And at her last appointment she was diagnosed in her neck. She has been on several biologic medications to halt progression and minimize deterioration. Some worked, like the Methotrexate, and others like Orencia did nothing. She has experienced remission a few times but she remained medicated each time. Today she is on Methotrexate again and Enbrel to work alongside it.
My Fighter
My daughter has never once cried or complained of pain, she will deny it to your face, and she refuses to sit out of gym or get out of running or any other physical activity. She sits still for her shots and blood draws. She knows she has to take medication for pain but she doesn’t really understand what JIA is or that she even has it. She has never used it as an excuse to get out of anything or stay home from school or to not do her work. She wakes up stiff and she may take a long time to get moving but she has a smile plastered on her face because she’s excited for each day. She is the strongest girl I know and she fights every day to make sure her life is happy. There was only one time in her life that she stopped and she said she can’t. We were at Disney on a three park pass and on the third day at Epcot she stopped in Germany and said “Mama I can’t. I can’t walk anymore.” And she sat down on a curb and put her head in her lap and she cried. Her brother sat down next to her for support. I asked her if she wanted to leave and she adamantly declined. So Mama took off running for the front gates of the park to rent a stroller for her. She finished the park in it and when we returned to the hotel I put her in a bath and gave her the only thing I could. Children’s Advil from the gift shop. She was in a full flare but she declared that it wasn’t stopping her from going to the pool for the rest of the night. And so we did.
The Fight
Allie is one of 300,000 kids with arthritis in the US and every one of these kids are fighters and survivors. As parents we hope and we pray that awareness of this disease will bring a cure but we know that the lack of funding for research and the lack of practicing pediatric rheumatologists limit those chances. We are preparing our children for a lifetime fighting this disease but we never lose hope. Every single person who learns about this disease brings exposure to the fight. Every dollar raised brings improvements to the medicine and treatments available and every success by the pharmaceutical companies doing research brings us closer to a cure. So as parents we fight for kids and science and technology fights for us all.
A Note of Thanks
Thank you for reading this post about my daughter and all our arthritis kids. Your support is greatly appreciated and I hope you now have a better understanding about a disease that needs more awareness and exposure in order to help alleviate the pain and suffering of our children. The more people know that kids get arthritis too the better chance we have at improving our children’s quality of life.
Want to Know More?
If you would like to know more about Juvenile Idiopathic Arthritis please visit the Juvenile Arthritis Foundation at https://www.arthritis.org/about-arthritis/types/juvenile-arthritis/ or the Arthritis National Research Foundation at https://curearthritis.org/juvenile-arthritis/
STARLIGHT POETRY BY KAI
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© 2019-2020 Copyright Starlight Poetry
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View Me on Twitter @kairosoflife
See Creativity Chaos - a Creativity Blog by Kai
About | Reprints & Copyrights | Home
© 2019-2020 Copyright Starlight Poetry
VIEW FULL SITE DIRECTORY