I HATE that my child can barely walk. I am thanking God that he has the next two weeks off from school. My heart aches because I can not do anything for him. No scratch that, I can help him walk, I can give him the meds he was prescribed, and I can pray for him. Not only him though, for all of us. And for all the kids that are suffering with this.
Tonight I am heartbroken.
12.18.2009
The appointment
Weds. was our appointment with the ped. rheumatologist in Gainesville. The drive up was ok, for those that don't know, Gainesville is about 2 hours from our home in Longwood. We arrived at Shands Medical Plaza at 1pm, an hour before our scheduled appointment. Check in was easy and painless, haha!, and we were put in a room quickly.
Dr. Modica came in and she asked for the story of how we ended up seeing her. So after that she started to examine Jackson. Jackson was diagnosed with JIA, and more specifically, polyarticular arthritis
Jackson was given an infusion of a combo of methotrexate and prednisone. We were also sent home with scripts for methotrexate, prednisone, naproxen [increase in dosage] and one more thing that I can not think of right off the top of my head. The methotrexate is done once a week by injection, 24 hours after that he has to take a "folic acid" pill. The naproxen is still done twice a day along with a zantac pill. The prednisone is taken in decreasing doses for 5 days at a time.
In three weeks we go back to Gainesville for a followup visit and another infusion. I was told to pack a bag because we may be admitted to Shands for 3 solid days of infusions.
If this seems like a lot of info to absorb, it is. We are taking it day by day. I was taught how to give injections and will be doing it for the first time next Weds.
And there you have it. Questions? Call me or Pat, if you have the number, lol. We'll be happy to answer, although we're still learning too. =)
Dr. Modica came in and she asked for the story of how we ended up seeing her. So after that she started to examine Jackson. Jackson was diagnosed with JIA, and more specifically, polyarticular arthritis
Jackson was given an infusion of a combo of methotrexate and prednisone. We were also sent home with scripts for methotrexate, prednisone, naproxen [increase in dosage] and one more thing that I can not think of right off the top of my head. The methotrexate is done once a week by injection, 24 hours after that he has to take a "folic acid" pill. The naproxen is still done twice a day along with a zantac pill. The prednisone is taken in decreasing doses for 5 days at a time.
In three weeks we go back to Gainesville for a followup visit and another infusion. I was told to pack a bag because we may be admitted to Shands for 3 solid days of infusions.
If this seems like a lot of info to absorb, it is. We are taking it day by day. I was taught how to give injections and will be doing it for the first time next Weds.
And there you have it. Questions? Call me or Pat, if you have the number, lol. We'll be happy to answer, although we're still learning too. =)
12.14.2009
Insurance, doctors, and hospitals, OH MY!
So last week I was able to get things in order regarding a new pediatrician for both the boys. Shawn is on Amerigroup and Jackson is on CMS so I called the ped. they were seeing to see if they accepted BOTH insurances. Guess what? They accept Amerigroup but not CMS. Ummm, what? Ok, so then I was on the hunt for a new ped. that BOTH boys could see. On Jackson's CMS card there was one doctor and on Shawn's Amerigroup card there was of course another.
I did some research, no scratch that, I tried to do some research on the doc. listed on Jackson's ID card and I wasn't too thrilled with what I did find. So then it was on to checking out the doc listed on Shawn's ID card. I was happy with the results but then I had to make the phone call to make sure that both boys could be seen by her. After calling, leaving a message, and getting a call back fairly quickly we had to find out what type of insurance they accepted regarding CMS, and low and behold, we're in business. =)
Now comes the task of calling Jackson's nurse care coordinator at CMS and giving her the number and name of the nurse at the new ped's office so they can get connected. The I need to get their records transferred, that requires a call to the new patient person at the office and seeing if she can email me the form so that I can sign it, and fax it back to her so we can get the ball rolling. Then I have to call Arnold Palmer and get his records from there sent to the new ped's office. Not to mention tracking down their records from when they were little a seeing a doc in Kissimmee. Oy!!
I plan on handling all of that tomorrow. In the mean time Jackson is doing well. His left foot is still swollen and so are 4 out of 5 fingers on his right hand, not to mention one of his knees but he is working through it =). That child amazes me.
We have our first visit with the ped. rheumatologist on Weds.
I'll update that night, hopefully, lol, because the boys also have their holiday party with cub scouts that night too.
I did some research, no scratch that, I tried to do some research on the doc. listed on Jackson's ID card and I wasn't too thrilled with what I did find. So then it was on to checking out the doc listed on Shawn's ID card. I was happy with the results but then I had to make the phone call to make sure that both boys could be seen by her. After calling, leaving a message, and getting a call back fairly quickly we had to find out what type of insurance they accepted regarding CMS, and low and behold, we're in business. =)
Now comes the task of calling Jackson's nurse care coordinator at CMS and giving her the number and name of the nurse at the new ped's office so they can get connected. The I need to get their records transferred, that requires a call to the new patient person at the office and seeing if she can email me the form so that I can sign it, and fax it back to her so we can get the ball rolling. Then I have to call Arnold Palmer and get his records from there sent to the new ped's office. Not to mention tracking down their records from when they were little a seeing a doc in Kissimmee. Oy!!
I plan on handling all of that tomorrow. In the mean time Jackson is doing well. His left foot is still swollen and so are 4 out of 5 fingers on his right hand, not to mention one of his knees but he is working through it =). That child amazes me.
We have our first visit with the ped. rheumatologist on Weds.
I'll update that night, hopefully, lol, because the boys also have their holiday party with cub scouts that night too.
12.10.2009
The 16th can't get here soon enough
I love my son. I love his brother. I don't love how I am handling things where JA is concerned. It's frustrating....to Jackson, to me, to Shawn, to Patrick, to ALL of us.
Today, and all week in fact, I have dropped off my children at school only to be met with tear filled eyes when we get closer to the drop off area. Simply put, Jackson is in pain and doesn't understand why he can't just stay home with me. He doesn't understand that he needs to try and keep moving so that things don't get more stiff than they already are. It's heart breaking, really, to watch your 7 year old struggle with every step, find a new way to hold a pencil in a hand that has 4 out of 5 digits swollen.
The ever changing weather here in Florida isn't helping him either. It was a humid and icky feeling 74 degrees this morning when we left for school. Now? Well now after the rain and the cold front has had a chance to march right on through, it's 64 degrees.
Our first appointment is next Weds. the 16th at 2pm. I'm hoping to learn more about JA and hopefully find a different treatment, I'm afraid the naproxen is starting to not work anymore.
Today, and all week in fact, I have dropped off my children at school only to be met with tear filled eyes when we get closer to the drop off area. Simply put, Jackson is in pain and doesn't understand why he can't just stay home with me. He doesn't understand that he needs to try and keep moving so that things don't get more stiff than they already are. It's heart breaking, really, to watch your 7 year old struggle with every step, find a new way to hold a pencil in a hand that has 4 out of 5 digits swollen.
The ever changing weather here in Florida isn't helping him either. It was a humid and icky feeling 74 degrees this morning when we left for school. Now? Well now after the rain and the cold front has had a chance to march right on through, it's 64 degrees.
Our first appointment is next Weds. the 16th at 2pm. I'm hoping to learn more about JA and hopefully find a different treatment, I'm afraid the naproxen is starting to not work anymore.
12.08.2009
The Beginning
First let me say Welcome! I hope that this blog will not only inform you but allow you to come on the journey with us.
Now onto to how we got here.
As you all know, Jackson is a 7 yr old who is full of life and love. He is vibrant and smart. He is a little brother to his big brother Shawn. =) He is for all intensive purposes a momma's boy and I wouldn't have it any other way.
Our journey started on November 15th of 2009. It all started with a swollen left big toe and a swollen right pinky with a red line on the inside that looked like Jackson was bit by something. Patrick called his brother and ask him for some advice. [Back story real quick, my brother in law is a firefighter out of Osceola County, by calling him we knew he could bounce thoughts off co-workers] All thought that maybe Jackson was bit by something, although we couldn't locate a bit mark ANY where on his body. It was suggested that we give him some benadryl and keep an eye on him so we did just that. After several hours we checked his temp and it was about 100 degrees so not really a fever. We gave him some Motrin and waited it out some more.
We finally decided to take Jackson to South Seminole Hospital ER. We checked in and waited to be taken back. Once in a room, we were met with the PA who asked questions and we answered as best we could. You see, nothing else was wrong with Jackson. Nothing at all. Other than a swollen toe and pinky he was fine. The PA decided to get some x-rays and go from there. About an hour later we were again visited by the PA who told us that the x-rays didn't show anything abnormal and that she was leaning towards an infection of some kind. That conclusion was came to because on the inside of Jackson's pinky it was red, like he was bit by something.
A doctor came in shortly there after and informed us that we were going to be given a prescription for an antibiotic that Jackson was to take for 5 days, 4 times a day. Okie dokie! So that's what we did. For 5 days Jackson took that antibiotic 4 times a day, 6am, noon, 6pm, and midnight. All the while, 2 more fingers [his thumb and the finger next to his pinky] on his right hand were swelling. My thought? This is going to get worse before it gets better. Little did I know what was happening.
The weekend before Thanksgiving, the boys went on a camping trip. It is to my understanding that Jackson's fingers and toe started to hurt then. He stuck it out though and had fun. Patrick gave him Motrin when needed and that was that, or so we thought.
The boys were out of school for a week for Thanksgiving so the first day of their break, I decided to clean their rooms with their help. Jackson's room was first, he helped as best he could as he was still complaining of pain in his fingers and toe. We got it done and he lounged on the ouch for the rest of the day. And by lounge I mean lay there not doing anything but watching cartoons. He never asked to play the Wii, he never asked to go on Pat's computer, he didn't do anything but lay there. Some thing wasn't right and I felt it deep in my soul.
Patrick went to school, he had a final to take, and the boys and I headed back to South Seminole ER. It was about 5:30 when we left and by 6pm we were back in a room. As fate would have it, the same PA we saw the previous week entered the room. She remembered us, and then the questions started again. I answered the best I could and she left with some ideas of what could be going on. Next we were visited by the Doctor and he had all the details about Jackson, from the previous week to that point. He checked out his fingers and toe and said that infection was no longer the way they were going. He explained that he would like to take blood and have some tests done because he was thinking some thing along the lines of arthritis. Needless to say I was shocked but agreed to the blood testing.
SEVERAL hours later we had results. Doctor's suspicion proved to be right on. He gave us two choices, he could give us referrals to several different rheumatologists or Jackson could be transferred to Arnold Palmer where they could do further testing and get a better understanding of what was going on. Patrick and I looked at each other and that was all it took, a look, to make the decision to have him transferred.
Shawn was taken to a friend's house for the night [no school that week] and Patrick's parents were called. Some time after midnight, transport came and away we went on our adventure to Arnold Palmer, not. Sitting in the back of an ambulance is no fun when you get motion sickness, haha, but Jackson asked me to ride with him so ride with him is what I did. In the early morning hours of Tuesday morning we arrived at Arnold Palmer and were taken to our room. The doctors on call that shift came in, did a look over with Jackson, and explained that things would start happening around 8am.
After getting about 3 hours of very uncomfortable sleep, I woke up and the day nurse and tech came in to introduce themselves. One doctor came in, then another, and then a team of doctors came in all asking the same things. We answered everything to the best of our availability and we're told they were going to get in contact with a pediatric rheumatologist out of Gainesville. That afternoon the nurses/tech came in, took some blood, and then we waited some more. There was a lot of waiting that went on.
Jackson was in good spirits the whole time, playing with the bed, and daydreaming about the food he would order for breakfast, lunch, and dinner. He was given a box of Legos to play with and he had a great view of the Christmas tree at Winnie Palmer. Tuesday was a day of learning for all of us.
Wed. morning came and Patrick went to work. Shawn at this point was now at my brother and sister in law's. At 8am, doctor number one from Tuesday came in and explained all the test results to me. All I heard was juvenile arhritis. I was told we would see the ped. rheumatologist from Gainesville and given prescriptions for Naproxen and liquid Zantac.
So that's our story. Jackson takes the Naproxen twice a day and I opted to not get the script. for the liquid Zantac, it was $300! Instead he takes half a generic Zantac in the am and a full one in the pm. We finally got the insurance issues figured out today and Jackson will be seeing the ped. rheumatologist next week.
Now onto to how we got here.
As you all know, Jackson is a 7 yr old who is full of life and love. He is vibrant and smart. He is a little brother to his big brother Shawn. =) He is for all intensive purposes a momma's boy and I wouldn't have it any other way.
Our journey started on November 15th of 2009. It all started with a swollen left big toe and a swollen right pinky with a red line on the inside that looked like Jackson was bit by something. Patrick called his brother and ask him for some advice. [Back story real quick, my brother in law is a firefighter out of Osceola County, by calling him we knew he could bounce thoughts off co-workers] All thought that maybe Jackson was bit by something, although we couldn't locate a bit mark ANY where on his body. It was suggested that we give him some benadryl and keep an eye on him so we did just that. After several hours we checked his temp and it was about 100 degrees so not really a fever. We gave him some Motrin and waited it out some more.
We finally decided to take Jackson to South Seminole Hospital ER. We checked in and waited to be taken back. Once in a room, we were met with the PA who asked questions and we answered as best we could. You see, nothing else was wrong with Jackson. Nothing at all. Other than a swollen toe and pinky he was fine. The PA decided to get some x-rays and go from there. About an hour later we were again visited by the PA who told us that the x-rays didn't show anything abnormal and that she was leaning towards an infection of some kind. That conclusion was came to because on the inside of Jackson's pinky it was red, like he was bit by something.
A doctor came in shortly there after and informed us that we were going to be given a prescription for an antibiotic that Jackson was to take for 5 days, 4 times a day. Okie dokie! So that's what we did. For 5 days Jackson took that antibiotic 4 times a day, 6am, noon, 6pm, and midnight. All the while, 2 more fingers [his thumb and the finger next to his pinky] on his right hand were swelling. My thought? This is going to get worse before it gets better. Little did I know what was happening.
The weekend before Thanksgiving, the boys went on a camping trip. It is to my understanding that Jackson's fingers and toe started to hurt then. He stuck it out though and had fun. Patrick gave him Motrin when needed and that was that, or so we thought.
The boys were out of school for a week for Thanksgiving so the first day of their break, I decided to clean their rooms with their help. Jackson's room was first, he helped as best he could as he was still complaining of pain in his fingers and toe. We got it done and he lounged on the ouch for the rest of the day. And by lounge I mean lay there not doing anything but watching cartoons. He never asked to play the Wii, he never asked to go on Pat's computer, he didn't do anything but lay there. Some thing wasn't right and I felt it deep in my soul.
Patrick went to school, he had a final to take, and the boys and I headed back to South Seminole ER. It was about 5:30 when we left and by 6pm we were back in a room. As fate would have it, the same PA we saw the previous week entered the room. She remembered us, and then the questions started again. I answered the best I could and she left with some ideas of what could be going on. Next we were visited by the Doctor and he had all the details about Jackson, from the previous week to that point. He checked out his fingers and toe and said that infection was no longer the way they were going. He explained that he would like to take blood and have some tests done because he was thinking some thing along the lines of arthritis. Needless to say I was shocked but agreed to the blood testing.
SEVERAL hours later we had results. Doctor's suspicion proved to be right on. He gave us two choices, he could give us referrals to several different rheumatologists or Jackson could be transferred to Arnold Palmer where they could do further testing and get a better understanding of what was going on. Patrick and I looked at each other and that was all it took, a look, to make the decision to have him transferred.
Shawn was taken to a friend's house for the night [no school that week] and Patrick's parents were called. Some time after midnight, transport came and away we went on our adventure to Arnold Palmer, not. Sitting in the back of an ambulance is no fun when you get motion sickness, haha, but Jackson asked me to ride with him so ride with him is what I did. In the early morning hours of Tuesday morning we arrived at Arnold Palmer and were taken to our room. The doctors on call that shift came in, did a look over with Jackson, and explained that things would start happening around 8am.
After getting about 3 hours of very uncomfortable sleep, I woke up and the day nurse and tech came in to introduce themselves. One doctor came in, then another, and then a team of doctors came in all asking the same things. We answered everything to the best of our availability and we're told they were going to get in contact with a pediatric rheumatologist out of Gainesville. That afternoon the nurses/tech came in, took some blood, and then we waited some more. There was a lot of waiting that went on.
Jackson was in good spirits the whole time, playing with the bed, and daydreaming about the food he would order for breakfast, lunch, and dinner. He was given a box of Legos to play with and he had a great view of the Christmas tree at Winnie Palmer. Tuesday was a day of learning for all of us.
Wed. morning came and Patrick went to work. Shawn at this point was now at my brother and sister in law's. At 8am, doctor number one from Tuesday came in and explained all the test results to me. All I heard was juvenile arhritis. I was told we would see the ped. rheumatologist from Gainesville and given prescriptions for Naproxen and liquid Zantac.
So that's our story. Jackson takes the Naproxen twice a day and I opted to not get the script. for the liquid Zantac, it was $300! Instead he takes half a generic Zantac in the am and a full one in the pm. We finally got the insurance issues figured out today and Jackson will be seeing the ped. rheumatologist next week.
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