RaspberrySwirl
Well-Known Member
A lot of you knowSebastian's Little Girl...my little girl...and I'd like to share withyou what is going on inour life right now. Bear with me, thisis long. I guess I'm still venting.
My family has a long and strong historyof auto immune disease. My grandmother, mother, sister, cousins, myselfand three of my children have Rheumatoid Arthritis or Lupus. When SLGwas 2 1/2 she was hospitalized and diagnosed with Juvenile RheumatoidArthritis. She was primarily effected in her right ankle and we wereable to keep it isolated to that ankle withmedicationsandthrough the care of a Rheumatologist. After3years, thankfully she went into remission. She has been symptom free,and medication free forover two years now.
About a month or so ago, I noticed shewas limping. She had injured her ankle in the last soccer game of theseason, so I kept an eye on it. It has gotten worse in the last coupleof weeks and has become swollen, hot andsore. Last week shebegan to complain of her other ankle bothering her. Sunday she said herright wristhurt. I called her Rheumatologist firstthingMonday morning and they got her right in. Her Arthritishas returned. She has inflammation, painandswellinginboth ankles, her feet, hertoes, her wrists, her knuckles, andher left shoulder that weare sure about. There may be involvement in other joints, butat that point he stopped and said "lets talk about what we are going todo."
She has begun her medications again andwill stay on these meds for two months. If we don't see a slow down inthe disease, or some improvement of some kind at the end of those twomonths, she will begin a more toxic medication. It's very important totreat the disease very aggressively because as quickly as it hasreturned and as fast as it's spreading it could be very damaging to herjoints. When a child is this young and actively growing, it's crucialto keep the damage to a minimum. Rheumatoid Arthritis is different than"just being stiff". It actually attacks the body and destroys thejoint. It can also destroy the other organs. If it begins to severelyattack one knee for instance, while the other knee continues to grownormally, then she will have one leg longer than the other.
It's a very painful disease. When she waslittle, she would lay in my arms when she had the fevers and I wouldjust rock her for hours while she slept.I'd carry hereverywhere andshe couldsleep in on the days she washurting. Shecould soak in th hot bath during the day when shedidn't feel good. It's all going to be different now because she'solder and we have to adjust to her being in school.We can'tjust live our life however we need to in order to make her feel better.
I've lived withpain for yearsand it breaks my heart that my little girl has to go through thistoo.She is so active and full of life.
She went into remission once. It canhappen again.I believe in the power of positive thinking andin the power of prayer. Please, my friends, I'm asking youtokeep my little girl in your thoughts and prayers.
Raspberry
My family has a long and strong historyof auto immune disease. My grandmother, mother, sister, cousins, myselfand three of my children have Rheumatoid Arthritis or Lupus. When SLGwas 2 1/2 she was hospitalized and diagnosed with Juvenile RheumatoidArthritis. She was primarily effected in her right ankle and we wereable to keep it isolated to that ankle withmedicationsandthrough the care of a Rheumatologist. After3years, thankfully she went into remission. She has been symptom free,and medication free forover two years now.
About a month or so ago, I noticed shewas limping. She had injured her ankle in the last soccer game of theseason, so I kept an eye on it. It has gotten worse in the last coupleof weeks and has become swollen, hot andsore. Last week shebegan to complain of her other ankle bothering her. Sunday she said herright wristhurt. I called her Rheumatologist firstthingMonday morning and they got her right in. Her Arthritishas returned. She has inflammation, painandswellinginboth ankles, her feet, hertoes, her wrists, her knuckles, andher left shoulder that weare sure about. There may be involvement in other joints, butat that point he stopped and said "lets talk about what we are going todo."
She has begun her medications again andwill stay on these meds for two months. If we don't see a slow down inthe disease, or some improvement of some kind at the end of those twomonths, she will begin a more toxic medication. It's very important totreat the disease very aggressively because as quickly as it hasreturned and as fast as it's spreading it could be very damaging to herjoints. When a child is this young and actively growing, it's crucialto keep the damage to a minimum. Rheumatoid Arthritis is different than"just being stiff". It actually attacks the body and destroys thejoint. It can also destroy the other organs. If it begins to severelyattack one knee for instance, while the other knee continues to grownormally, then she will have one leg longer than the other.
It's a very painful disease. When she waslittle, she would lay in my arms when she had the fevers and I wouldjust rock her for hours while she slept.I'd carry hereverywhere andshe couldsleep in on the days she washurting. Shecould soak in th hot bath during the day when shedidn't feel good. It's all going to be different now because she'solder and we have to adjust to her being in school.We can'tjust live our life however we need to in order to make her feel better.
I've lived withpain for yearsand it breaks my heart that my little girl has to go through thistoo.She is so active and full of life.
She went into remission once. It canhappen again.I believe in the power of positive thinking andin the power of prayer. Please, my friends, I'm asking youtokeep my little girl in your thoughts and prayers.
Raspberry
ray:
