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Thursday, January 26, 2012
Lately, Kacee has been complaining about her right leg hurting. It started back when I allowed her to play soccer. Then stopped shortly after the season was over, but now more pain. I am keeping a close eye on her, hopefully it is nothing. It is not in a joint so much but the ligament in her leg. I just hope her legs are not starting to contract again. Please come follow her at;
http://www.facebook.com/KaceesJRAHeroes
https://twitter.com/#!/KaceesJRAHeroes
http://www.facebook.com/KaceesJRAHeroes
https://twitter.com/#!/KaceesJRAHeroes
Thursday, January 12, 2012
Kacee's story
Kacee is the youngest child in our family; she has one half
sister and four half brothers. She was born in Nashville, TN in December of
1999. Her mother, I was born and raised in Tennessee, while her father was born
and raised in Puerto Rico.
The next October we moved to Florida. Kacee was growing just like any other child, even walked a bit early. By 10 months she was tearing across the house. Somewhere around 14 months she started limping, after having 3 other children I thought she had just twisted her knee on the chair that her and her sister would spin round and round, because Kacee would fall all the time. After a couple of days I noticed that her limping was now on the other leg and this puzzled me. I decided that I was going to take her to the emergency room just to make sure she had not broken anything. The hospital did not find anything and sent me home. During this same time Kacee started refusing to drink milk, which I found very odd because she drank so much.
Within a month Kacee stopped walking all together, I had no idea what to do. I didn't have medical insurance, could not work because no daycare would keep her and my husband barely made enough to pay the bills. Even tried to get Medicaid for my daughter and couldn't but did get it on my other child. The system is really messed up. I took her to another emergency room where I was made to feel like I was an idiot. The nurse kept saying some children walk late over and over. She would not listen to me when I would say it is a problem when she used to walk. Again they could not find anything wrong. The next day I called a pediatrician hoping that they might care, since the emergency rooms could do nothing. I received an appointment two week later, by the time we went Kacee could no longer straighten her legs. The doctor did not know what was wrong but sent her to an orthopedic specialist. This appointment was in two months.
Finally, time to take her to the orthopedic doctor. During the waiting period Kacee's knees became swollen, her knees were larger than mine. She also had begun to swell in her hands, one finger on the right hand and the thumb on her left. They took ex-rays of her legs and hands. When the doctor can in and started looking at the ex-rays he asked had she ever broken her legs, I informed him of what the two emergency rooms had said and replied no. He showed me that she had a covering on her legs that only occurs when a bone has been broken, but also said that this egg shell like covering is covering her entire bone structure. This is not how things should happen because if a bone is broken it should have the covering over the spot that was broken. He then told me, I have never seen anything like this and have no idea what it could be. He asked me to wait while he discussed her case with another doctor in the office. This doctor told us he had seen this before and thought it was JRA. They referred me to another specialist. Waiting another month for an appointment.
This doctor a Rheumatologist, when he saw Kacee and could not believe what he seeing, he told us to go to this place and they ran a lot of blood test to rule out many similar illnesses that this could be, like lime disease and leukemia. He prescribed Naproxen for swelling and pain. In a month we were to come back and think of any questions we might have.
At the next appointment we were relieved to find out that it was not leukemia, but she did have JRA. As soon as we asked the first question, he excused himself and came back telling us we needed to go to a specialist because this can cause kidney failure. We were stunned and speechless. He sent us home and had us do more blood test and go to the doctor for her kidneys.
The next appointment, kidneys find. stop giving her the naproxen because it is building up in her liver. Any questions? We asked him something and again out of the room he went. I actually believe he was going to look up the answer. When he came back he did not answer the question, but again scared the heck out of us with this, "Take her to an Optometrist because this can cause blindness. Any other questions?" Again so stunned that I could not think of any of the question I had written down in front of me, at the same time I was scared to ask.
Orthopedic appointment and we were sent to have braces made in her shoes and for her legs. I made an appointment at the social security administration. Finally some help, Kacee was approved for SSI which got her on Medicaid. Went and was fitted for braces and then back to Rheumatologist, I hated to go, what was he going to say this time. Again after asking him a question he ran out of the room, now I know this doctor has no idea what he is doing. Physical Therapy he said, get you primary doctor to take care of this.
Next the Optometrist, no swelling now but scar tissue present from past swelling. Will have to keep taking her every month.
For the next couple of years all of these doctors were seen over and over along with physical therapy. No change at all. Kacee actually bent her braces so that was not working either. Next was casting the legs. This never happened.
We went to Tennessee and saw family and stopped at some friends house. They felt so bad for Kacee and anointed her head with oil and prayed for her. We went home the next day and two days later something amazing happened. Kacee stood up, her legs were not completely straight but she walked. Now my faith in God has come to the highest point it ever has, I know it was his grace that helped my daughter.
Now I still have to go to the rheumatologist and now I know he is a quack, because he prescribed her naproxen again (let place her back on the same medication that built up in her liver). Did he even look at her chart at all???? Needless to say that was the last time I ever went to him. My primary care would not send her to a different doctor and it was because there was not another one within 150 mile that accepted my insurance and if they did accept insurance they did not see children under five. I was back to point A. I had to stop SSI because they kept sending me money because they under paid me. Then send me a letter I was over paid, total $4,200 dollars. At this rate I would not receive social security when I retire, trust me they informed me that they will get it back.
For years we have struggled with swelling and pain, but gradually it has decreased. Every now and then she still has some pain but for the most part she is doing well considering she has not seen a doctor in around eight years.
The next October we moved to Florida. Kacee was growing just like any other child, even walked a bit early. By 10 months she was tearing across the house. Somewhere around 14 months she started limping, after having 3 other children I thought she had just twisted her knee on the chair that her and her sister would spin round and round, because Kacee would fall all the time. After a couple of days I noticed that her limping was now on the other leg and this puzzled me. I decided that I was going to take her to the emergency room just to make sure she had not broken anything. The hospital did not find anything and sent me home. During this same time Kacee started refusing to drink milk, which I found very odd because she drank so much.
Within a month Kacee stopped walking all together, I had no idea what to do. I didn't have medical insurance, could not work because no daycare would keep her and my husband barely made enough to pay the bills. Even tried to get Medicaid for my daughter and couldn't but did get it on my other child. The system is really messed up. I took her to another emergency room where I was made to feel like I was an idiot. The nurse kept saying some children walk late over and over. She would not listen to me when I would say it is a problem when she used to walk. Again they could not find anything wrong. The next day I called a pediatrician hoping that they might care, since the emergency rooms could do nothing. I received an appointment two week later, by the time we went Kacee could no longer straighten her legs. The doctor did not know what was wrong but sent her to an orthopedic specialist. This appointment was in two months.
Finally, time to take her to the orthopedic doctor. During the waiting period Kacee's knees became swollen, her knees were larger than mine. She also had begun to swell in her hands, one finger on the right hand and the thumb on her left. They took ex-rays of her legs and hands. When the doctor can in and started looking at the ex-rays he asked had she ever broken her legs, I informed him of what the two emergency rooms had said and replied no. He showed me that she had a covering on her legs that only occurs when a bone has been broken, but also said that this egg shell like covering is covering her entire bone structure. This is not how things should happen because if a bone is broken it should have the covering over the spot that was broken. He then told me, I have never seen anything like this and have no idea what it could be. He asked me to wait while he discussed her case with another doctor in the office. This doctor told us he had seen this before and thought it was JRA. They referred me to another specialist. Waiting another month for an appointment.
This doctor a Rheumatologist, when he saw Kacee and could not believe what he seeing, he told us to go to this place and they ran a lot of blood test to rule out many similar illnesses that this could be, like lime disease and leukemia. He prescribed Naproxen for swelling and pain. In a month we were to come back and think of any questions we might have.
At the next appointment we were relieved to find out that it was not leukemia, but she did have JRA. As soon as we asked the first question, he excused himself and came back telling us we needed to go to a specialist because this can cause kidney failure. We were stunned and speechless. He sent us home and had us do more blood test and go to the doctor for her kidneys.
The next appointment, kidneys find. stop giving her the naproxen because it is building up in her liver. Any questions? We asked him something and again out of the room he went. I actually believe he was going to look up the answer. When he came back he did not answer the question, but again scared the heck out of us with this, "Take her to an Optometrist because this can cause blindness. Any other questions?" Again so stunned that I could not think of any of the question I had written down in front of me, at the same time I was scared to ask.
Orthopedic appointment and we were sent to have braces made in her shoes and for her legs. I made an appointment at the social security administration. Finally some help, Kacee was approved for SSI which got her on Medicaid. Went and was fitted for braces and then back to Rheumatologist, I hated to go, what was he going to say this time. Again after asking him a question he ran out of the room, now I know this doctor has no idea what he is doing. Physical Therapy he said, get you primary doctor to take care of this.
Next the Optometrist, no swelling now but scar tissue present from past swelling. Will have to keep taking her every month.
For the next couple of years all of these doctors were seen over and over along with physical therapy. No change at all. Kacee actually bent her braces so that was not working either. Next was casting the legs. This never happened.
We went to Tennessee and saw family and stopped at some friends house. They felt so bad for Kacee and anointed her head with oil and prayed for her. We went home the next day and two days later something amazing happened. Kacee stood up, her legs were not completely straight but she walked. Now my faith in God has come to the highest point it ever has, I know it was his grace that helped my daughter.
Now I still have to go to the rheumatologist and now I know he is a quack, because he prescribed her naproxen again (let place her back on the same medication that built up in her liver). Did he even look at her chart at all???? Needless to say that was the last time I ever went to him. My primary care would not send her to a different doctor and it was because there was not another one within 150 mile that accepted my insurance and if they did accept insurance they did not see children under five. I was back to point A. I had to stop SSI because they kept sending me money because they under paid me. Then send me a letter I was over paid, total $4,200 dollars. At this rate I would not receive social security when I retire, trust me they informed me that they will get it back.
For years we have struggled with swelling and pain, but gradually it has decreased. Every now and then she still has some pain but for the most part she is doing well considering she has not seen a doctor in around eight years.
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