http://thenewsoftoday.com/sandoz-initiates-methotrexate-recall/4311/\
Methotrexate is being recalled but not all of them.
:( We have enough to worry about by just giving our kids these meds, now this.
10.25.2010
Document
This weekend, starting with Friday, Jackson started to complain about his knee hurting him. It's been two weeks since he's had a methotrexate shot. Then Saturday morning while at the show n sell [cub scouts] he complained of his back hurting. Again, it's been two weeks since he's had a methotrexate shot. He's taking his naproxin twice a day again, and I'm not sure if it's helping.
We have family in town so this past weekend was crazy busy. With that being said, Jackson didn't get his shots last night. Instead, he's getting them tonight. Please don't judge me and think that we were TOO busy for him to get his shots. That wasn't and isn't the case. Simply put, we didn't expect to be out so late yesterday.
I'm using my blog as a way to document his pain. So that if it happens again, I can mention it to the docs. I'm wondering if maybe two weeks between methotrexate shots isn't going to work. Only time will tell though.
I'm also writing it down. Well I'm jotting it down in a notebook that has been other random thoughts and notes in it and to be honest, I need to find a notebook that I dedicate strictly to Jackson's pain and flareups. Mental note made.
Other than knee pain he has foot pain but a lot of that is because he doesn't have much for arch support and his ankles tend to "bow" in. We're picking up his orthotic inserts next week so that should help within time. With all the walking we did this weekend, I am happy that he isn't in more pain. He was a trooper and when I asked him if he wanted to go to the van to sit and would tell me no. Eventually he gave him though.
We have family in town until about November 7th so this coming weekend is sure to be busy as well. He'll be getting both MTX and Humira tonight though so that should help.
Until next time.........
We have family in town so this past weekend was crazy busy. With that being said, Jackson didn't get his shots last night. Instead, he's getting them tonight. Please don't judge me and think that we were TOO busy for him to get his shots. That wasn't and isn't the case. Simply put, we didn't expect to be out so late yesterday.
I'm using my blog as a way to document his pain. So that if it happens again, I can mention it to the docs. I'm wondering if maybe two weeks between methotrexate shots isn't going to work. Only time will tell though.
I'm also writing it down. Well I'm jotting it down in a notebook that has been other random thoughts and notes in it and to be honest, I need to find a notebook that I dedicate strictly to Jackson's pain and flareups. Mental note made.
Other than knee pain he has foot pain but a lot of that is because he doesn't have much for arch support and his ankles tend to "bow" in. We're picking up his orthotic inserts next week so that should help within time. With all the walking we did this weekend, I am happy that he isn't in more pain. He was a trooper and when I asked him if he wanted to go to the van to sit and would tell me no. Eventually he gave him though.
We have family in town until about November 7th so this coming weekend is sure to be busy as well. He'll be getting both MTX and Humira tonight though so that should help.
Until next time.........
10.17.2010
A Message for Juvenile Arthritis
Dear JA,
Eff you! Seriously. Because of you JA, every weekend my child throws up before his shot. EVERY weekend. Without fail. He also screams, loud. Why can't my 8 year old be just that, an 8 year old! An 8 year old with no worries, no fears, and most of all, a childhood that isn't being robbed by an aweful auto immune disease. Instead, my 8 year old has to be reminded to take his TWICE daily dose of Naproxin, his once a day dose of generic Prilosec, and his biweekly dose of Leucavorin. Because of you JA, my child can't simply get a cold and get over it, oh no, he gets a cold and I have to watch him like a hawk to make sure it doesn't get worse. JA, you suck.
Sincerely,
Courtney
PS. Don't think I don't see the pain you are causing to Jackson's friends that have JA too. I see it and it makes me want to kick your ass all the more.
_________________________________________________________________________________
Eff you! Seriously. Because of you JA, every weekend my child throws up before his shot. EVERY weekend. Without fail. He also screams, loud. Why can't my 8 year old be just that, an 8 year old! An 8 year old with no worries, no fears, and most of all, a childhood that isn't being robbed by an aweful auto immune disease. Instead, my 8 year old has to be reminded to take his TWICE daily dose of Naproxin, his once a day dose of generic Prilosec, and his biweekly dose of Leucavorin. Because of you JA, my child can't simply get a cold and get over it, oh no, he gets a cold and I have to watch him like a hawk to make sure it doesn't get worse. JA, you suck.
Sincerely,
Courtney
PS. Don't think I don't see the pain you are causing to Jackson's friends that have JA too. I see it and it makes me want to kick your ass all the more.
_________________________________________________________________________________
10.07.2010
October 6, 2010
Today was Jackson's appointment in the swamp. I'm always nervous for these. Things change so much. Today was no different.
I'm going to get right to the point here. I walked out of the office with 4 scripts.
One for customized orthotics for arch support. Jackson doesn't have an arch. I have already called and made the appoint for next week. He also needs new shoes, shoes that offer support, Dr. E recommended Asics. We're going to look into how much they are this weekend although it doesn't matter because he NEEDS them so he will have them.
The next script is for Bactroban ointment. A few months ago Jackson started to get these "bumps". Mainly in the armpit area and the upper inner thigh. Went to the Pediatrician to find out what the heck was going on. She explained it is something called Molluscum Contagiosum. It's mainly a childhood thing and most children end up getting it. In a "normal" child, like my oldest, they normally go away within a years time. Yeah, I said a year. I know, right?! Crazy long! And yes, it's contagious, however, it's not harmful and deadly. Jackson is not a "normal" child though. Jackson has a suppressed immune system so chances are he'll have it for awhile. The Bactroban ointment will hopefully help, along with some other things that I still need to google and figure out.
A new script was also written for Naproxin which he is back to taking twice a day. :( Could be worse though and I know that and I also remind myself that each and every day.
A now for the good news? I think it's good. I hope you will too. Dr. E thinks that the Humira is working well for Jackson. She believes that it what is keeping him from flaring. Therefore, we are going to give Jackson methotrexate ONCE EVERY OTHER WEEK. No more once a week, one week he'll get two shots [Humira and Metho] and the next week he'll just get the Humira. She mentioned that she didn't like to do this cold turkey so for the next 4 months this is how it will be done. Unless he goes into a bad flare and then of course it can change. We go back on Feb. 16th.
So there it is. The good, the not so bad, and the ugly?
I'm going to get right to the point here. I walked out of the office with 4 scripts.
One for customized orthotics for arch support. Jackson doesn't have an arch. I have already called and made the appoint for next week. He also needs new shoes, shoes that offer support, Dr. E recommended Asics. We're going to look into how much they are this weekend although it doesn't matter because he NEEDS them so he will have them.
The next script is for Bactroban ointment. A few months ago Jackson started to get these "bumps". Mainly in the armpit area and the upper inner thigh. Went to the Pediatrician to find out what the heck was going on. She explained it is something called Molluscum Contagiosum. It's mainly a childhood thing and most children end up getting it. In a "normal" child, like my oldest, they normally go away within a years time. Yeah, I said a year. I know, right?! Crazy long! And yes, it's contagious, however, it's not harmful and deadly. Jackson is not a "normal" child though. Jackson has a suppressed immune system so chances are he'll have it for awhile. The Bactroban ointment will hopefully help, along with some other things that I still need to google and figure out.
A new script was also written for Naproxin which he is back to taking twice a day. :( Could be worse though and I know that and I also remind myself that each and every day.
A now for the good news? I think it's good. I hope you will too. Dr. E thinks that the Humira is working well for Jackson. She believes that it what is keeping him from flaring. Therefore, we are going to give Jackson methotrexate ONCE EVERY OTHER WEEK. No more once a week, one week he'll get two shots [Humira and Metho] and the next week he'll just get the Humira. She mentioned that she didn't like to do this cold turkey so for the next 4 months this is how it will be done. Unless he goes into a bad flare and then of course it can change. We go back on Feb. 16th.
So there it is. The good, the not so bad, and the ugly?
9.29.2010
World Arthritis Day - October 12th! (and an update)
I am asking everyone that I know to participate in World Arthritis Day on 10/12/10. How can you participate? Simple! Wear BLUE! Blue is the color of the ribbon that represents arthritis. And it would be awesome if all my family and friends were to GO BLUE!
If you go here, you learn more about World Arthritis Day.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Jackson has been doing well. We recently went to Gainesville for a JA Family Connect Day and had a great time!! The kids were kept occupied by a balloon man, and plenty of helpers so that us parents could hear the amazing speakers. I shed many tears and laughs. And it was pretty damn interesting to learn from Dr. Elder how they decide what meds to put our kiddos on.
Jackson is still doing well. His knee was bothering him the other day and it just so happened to be a day when he had P.E. I wrote a note to the Coach to let him know that Jackson needed to take it easy. And he did just that. We return to Gainesville on October 6th for his appointment. 4 months ago when we were there for his last appointment there was some talk about maybe taking him off the Humira.....I'm anxious to see about that.
If you go here, you learn more about World Arthritis Day.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Jackson has been doing well. We recently went to Gainesville for a JA Family Connect Day and had a great time!! The kids were kept occupied by a balloon man, and plenty of helpers so that us parents could hear the amazing speakers. I shed many tears and laughs. And it was pretty damn interesting to learn from Dr. Elder how they decide what meds to put our kiddos on.
Jackson is still doing well. His knee was bothering him the other day and it just so happened to be a day when he had P.E. I wrote a note to the Coach to let him know that Jackson needed to take it easy. And he did just that. We return to Gainesville on October 6th for his appointment. 4 months ago when we were there for his last appointment there was some talk about maybe taking him off the Humira.....I'm anxious to see about that.
9.09.2010
My apologies.
I don't update. I have nothing to update. That's good, right?
But wait, I do have one thing to update. I had to cancel Jackson's eye appointment with CMS. I didn't have a way to get there and I keep forgetting to call and reschedule. I know how important it is. So I will call Monday and reschedule.
We go to G-ville on the 6th of October for Jackson's appointment.
We're hoping to make it to the JA Family connect day on the 18th of this month. If we have the $$ for gas, we'll be there!
But wait, I do have one thing to update. I had to cancel Jackson's eye appointment with CMS. I didn't have a way to get there and I keep forgetting to call and reschedule. I know how important it is. So I will call Monday and reschedule.
We go to G-ville on the 6th of October for Jackson's appointment.
We're hoping to make it to the JA Family connect day on the 18th of this month. If we have the $$ for gas, we'll be there!
7.14.2010
Another bump in the road that is our life
On Monday, while at summer "camp" Jackson had his eyes checked, for free, by Florida's Vision Quest . They didn't do a full complete check, like to see if the arthritis is doing a number on his eyes, but it was free and lord knows he needed them checked. Guess what? He needs glasses. I'm not surprised. So not only does FL's vision quest do the exam for free, they supply the kids with one pair of glasses, child's choice, for free! And if we want to order a back up pair it's only $40.
We still have an appointment on the 5th with CMS. We'll know more than.
We still have an appointment on the 5th with CMS. We'll know more than.
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