Due to the medications Cameron is on, we have to get blood work every 4 weeks to check his liver function and also keep watch on his sedimentation rate (shows inflammation). I finally got the results of the labs that were drawn on Feb 18th. Liver tests were all within normal limits and his sed rate was *4*! In October, it was 50 and in December it was 41.
On another note, I took him back to the Dr yesterday due to the lingering congestion and cough. She is treating him for a sinus infection. Due to this, he will not be able to take his shots this weekend. He has to have at least 3 full days of antibiotics in his system before taking the shots. This would put us giving them to him on Sunday night or Monday, which would mean he would probably not be able to go to school the following day. He is usually really "hung over" for the first 24 hours or so after the shots.
Friday, February 26, 2010
Sunday, February 21, 2010
Shots, round 5 plus more
We had a very busy weekend!
On Friday morning, as Cameron was getting dressed for school, we had the tv on WLEX and Lee Cruse was at UK promoting their E-day. Cameron went last year with his grandfather and really enjoyed it! Cameron was excited and asked to go again so he wrote a note to his grandfather asking if he would take him again. Cameron's grandfather is an engineer and got his degree from UK. I think he's excited to see Cameron so enthusiastic to learn about engineering.
There was only one problem, it happened to fall at the same time as bowling league. To remedy this, we decided to go Friday to pre-bowl for the league. This is where he can bowl early and his scores will still count along with his team's scores. The only time we could get a lane for him to bowl was 7:30. There was a league going on at the same time, I think it was called the "Holy Rollers" league. We had to be put on the end next to some people in the league. They were a little apprehensive at first thinking he would be a typical kid and not show courtesy and just mess them all up. WE were told on several occasions by them how respectful and courteous he was!! Yay Cameron! Also, he bowled a 102 his first game and a 108 his second game! Was not his highest score, but with an average of 80, he did very well!
Saturday morning, Will and his father took Cameron to the E-day. They all three had a great time together. I went out with my aunt Deloise for some "retail therapy". Later I joined up with the guys and they both got haircuts. By the time we got home is was about 5pm.
We have to put the EMLA "magic cream" on him at least 30-45 minutes before giving the shots. Also, one shot has to be kept in the fridge so we have to give that one time to come up to room temperature and it also has to be mixed. The picture below shows what his "kit" looks like. There is a vial with white powder in it which is the medication. Then you see a glass syringe type thing in the middle. That is filled with a water-like solution. The blue thing on the other side is the plunger that goes into the syringe. There is also a clear adapter that you can't see very well. We have to put the adapter on the end of the syringe and the plunger on it then attach it to the vial. We push all the fluid into the vial and swirl (not shake) it for about 10 minutes until everything is dissolved. After that, we pull it back into the syringe and it's ready to inject.
On Friday morning, as Cameron was getting dressed for school, we had the tv on WLEX and Lee Cruse was at UK promoting their E-day. Cameron went last year with his grandfather and really enjoyed it! Cameron was excited and asked to go again so he wrote a note to his grandfather asking if he would take him again. Cameron's grandfather is an engineer and got his degree from UK. I think he's excited to see Cameron so enthusiastic to learn about engineering.
There was only one problem, it happened to fall at the same time as bowling league. To remedy this, we decided to go Friday to pre-bowl for the league. This is where he can bowl early and his scores will still count along with his team's scores. The only time we could get a lane for him to bowl was 7:30. There was a league going on at the same time, I think it was called the "Holy Rollers" league. We had to be put on the end next to some people in the league. They were a little apprehensive at first thinking he would be a typical kid and not show courtesy and just mess them all up. WE were told on several occasions by them how respectful and courteous he was!! Yay Cameron! Also, he bowled a 102 his first game and a 108 his second game! Was not his highest score, but with an average of 80, he did very well!
Saturday morning, Will and his father took Cameron to the E-day. They all three had a great time together. I went out with my aunt Deloise for some "retail therapy". Later I joined up with the guys and they both got haircuts. By the time we got home is was about 5pm.
We have to put the EMLA "magic cream" on him at least 30-45 minutes before giving the shots. Also, one shot has to be kept in the fridge so we have to give that one time to come up to room temperature and it also has to be mixed. The picture below shows what his "kit" looks like. There is a vial with white powder in it which is the medication. Then you see a glass syringe type thing in the middle. That is filled with a water-like solution. The blue thing on the other side is the plunger that goes into the syringe. There is also a clear adapter that you can't see very well. We have to put the adapter on the end of the syringe and the plunger on it then attach it to the vial. We push all the fluid into the vial and swirl (not shake) it for about 10 minutes until everything is dissolved. After that, we pull it back into the syringe and it's ready to inject.
He had the shots in his arms this time. I had him sit in my lap and kept his head turned away so he would not see the needles. Will gives him the shots. He got to get a bowl of ice cream after supper for doing so well with the shots. I think I'm going to buy stock in Breyer's ice cream... he really likes the chocolate and looks like that's what he's going to want with the shots. ;)
Cameron is getting more anxious each time with the shots. I'm not really sure why, they don't hurt he says. He has said several times he wishes he didn't have to take these shots and he wanted to go back to his old life before he had to start taking them. What do you tell an 8 year old when they say this!?! The only thing I can tell him is that he would be in much more pain much more often without the shots.
Side effects were not too bad so far this time. He woke up with his "hangover" headache and feeling bad for most of the morning. He's also getting more congested again and has started coughing a little. I'm going to call his pediatrician tomorrow and have him looked at just in case. He finished his antibiotics earlier this week for the ear infection.
Wednesday, February 17, 2010
Cabin Fever!
Ok, being out of school for snow is getting OLD! We are already into June. Hopefully there will be school tomorrow.
We go tomorrow to get his blood drawn. We will be doing this every 4 weeks for a while to check to see if the medicine is working and also if it is causing problems with his liver. I have plenty of the numbing cream so I plan to put that on his arms before we leave.
This week has been MUCH better with fewer side effects. He has complained several times of his ankle "giving out" when he was running through the house. I am not sure if it's due to the arthritis or the hypermobility. I guess I should let his Dr know the next time I talk to her.
Sunday, February 14, 2010
I'll stand.
When my heart breaks in half and my strength cannot last, when I'm lost in this land and I can't see Your plan, when my world falls apart and the light turns to dark, when the clouds gather round and the storms overwhelm on Christ I'll stand!
Saturday, February 13, 2010
Shots, round 4
Cameron had his shots again today... however, this time was a little different. First of all, we switched from the pre-filled syringes that were stinging so bad to the kind that has to be mixed. It was a little more work for us, but he said he barely felt a little tinge as he called it. Secondly, his dosage of methotrexate was increased from 20mg to 25mg.
Why you ask??? Well..... last week he started limping and saying his hip was really hurting. It lasted for about a day to a day and a half. He also complained of his neck hurting when he was doing homework. He said it hurt to look down to do his work. I put a call into the Rheumy office and was called back today at 1 PM (yes, on a Saturday). She said that it is very common for kids with arthritis in their jaws to also have it in their neck. She listed to everything I had to say and then asked how he was doing on the injections. I told her the side effects have been minimal so far and he seems to be tolerating them well....except for the stinging. She decided to go ahead and up the methotrexate. If he is still having new joints hurt or if these don't improve in 3 weeks, we are to call her back.
Today was also bowling day. He beat his high score yet again!!! He bowled a 128 his first game and 81 his second game. He really is doing well with the bowling despite the arthritis. His Dr told us to keep him as active as possible except for contact sports. We only have 3 more Saturdays to bowl and then the end of year banquet where they award trophies.
On a positive, Cameron got to spend some time with his cousins Meredith and Natalie. Only problem is that Natalie ended up vomiting while we were there. She had some congestion so I'm hoping that's all it was. Poor little thing has been through a lot herself. She finished her treatments for leukemia about 9 months ago and has done really well. She's now in Kindergarten and LOVES school.
Maybe gonna get a good snow tomorrow night... we'll see. I'm to the point where I'm tired of the cold and snow!
Why you ask??? Well..... last week he started limping and saying his hip was really hurting. It lasted for about a day to a day and a half. He also complained of his neck hurting when he was doing homework. He said it hurt to look down to do his work. I put a call into the Rheumy office and was called back today at 1 PM (yes, on a Saturday). She said that it is very common for kids with arthritis in their jaws to also have it in their neck. She listed to everything I had to say and then asked how he was doing on the injections. I told her the side effects have been minimal so far and he seems to be tolerating them well....except for the stinging. She decided to go ahead and up the methotrexate. If he is still having new joints hurt or if these don't improve in 3 weeks, we are to call her back.
Today was also bowling day. He beat his high score yet again!!! He bowled a 128 his first game and 81 his second game. He really is doing well with the bowling despite the arthritis. His Dr told us to keep him as active as possible except for contact sports. We only have 3 more Saturdays to bowl and then the end of year banquet where they award trophies.
On a positive, Cameron got to spend some time with his cousins Meredith and Natalie. Only problem is that Natalie ended up vomiting while we were there. She had some congestion so I'm hoping that's all it was. Poor little thing has been through a lot herself. She finished her treatments for leukemia about 9 months ago and has done really well. She's now in Kindergarten and LOVES school.
Maybe gonna get a good snow tomorrow night... we'll see. I'm to the point where I'm tired of the cold and snow!
Tuesday, February 9, 2010
A trip to the pediatrician
I called the Rheumy office to see if there was a decongestant I could give him for his runny nose. They said I really needed to have him looked at by the pediatrician even though there was no fever. So I called yesterday and got him in at 3pm.
It was our first trip to the pediatrician since starting the shots. My biggest concern was him being in the waiting room with all the other sick children. When I signed him in, there were only 2 other kids in there and I told the receptionist he was on drugs that suppress his immune system. She had us wait in the hall closer to where they come out and call your name. We only had to wait about one minute.
Cameron has seen several doctors in the practice. The one we normally see was not there so we had to pick another. I picked Dr Beth Hawse who was the one that saw him when we went in about his knee and started the ball rolling on the arthritis evaluation. If I'm not badly mistaken, she said that she has psoriatic arthritis. Maybe that explains why we were sent for the evaluation so quickly...
So... She looked him over and even checked his knees and ankles. He had fallen at school and bruised one knee up pretty good and she made sure to check it for any tears or injuries that need to be treated... nothing there...thankfully. Chest was clear and then she went to the ears. Right clear.... uh oh... left ear is infected! He had not complained a single time about his ear! She said apparently he is not a complainer so we're gonna have to watch him closer. If you remember, he didn't complain but a few times about his jaws hurting and come to find out, he already has some joint damage there! Also, from what I understand, the drugs he is on will mask any fevers or other signs that tell me he is sick.
So, we get our prescription for augmentin, 750mg 2x a day... he was told to stay home one more day which ended up not being a problem with the snow out there.
It was our first trip to the pediatrician since starting the shots. My biggest concern was him being in the waiting room with all the other sick children. When I signed him in, there were only 2 other kids in there and I told the receptionist he was on drugs that suppress his immune system. She had us wait in the hall closer to where they come out and call your name. We only had to wait about one minute.
Cameron has seen several doctors in the practice. The one we normally see was not there so we had to pick another. I picked Dr Beth Hawse who was the one that saw him when we went in about his knee and started the ball rolling on the arthritis evaluation. If I'm not badly mistaken, she said that she has psoriatic arthritis. Maybe that explains why we were sent for the evaluation so quickly...
So... She looked him over and even checked his knees and ankles. He had fallen at school and bruised one knee up pretty good and she made sure to check it for any tears or injuries that need to be treated... nothing there...thankfully. Chest was clear and then she went to the ears. Right clear.... uh oh... left ear is infected! He had not complained a single time about his ear! She said apparently he is not a complainer so we're gonna have to watch him closer. If you remember, he didn't complain but a few times about his jaws hurting and come to find out, he already has some joint damage there! Also, from what I understand, the drugs he is on will mask any fevers or other signs that tell me he is sick.
So, we get our prescription for augmentin, 750mg 2x a day... he was told to stay home one more day which ended up not being a problem with the snow out there.
Sunday, February 7, 2010
Swollen eyes
December 2009
February 7, 2010
Ok, as you can see from the pictures, Cameron's eyes are puffy and you can't see it very well in the pictures, but they are also bloodshot. His nose has been running so there's some redness there too.
We got out of the house this afternoon for a couple hours. While we were out, Cameron asked "Mommy, why can't I go back to my old life where I didn't have to take shots that make me feel bad all the time." What do you tell an 8 year old child when they ask that question?? I just told him I didn't know why things have to be this way either. It's just something we're gonna have to deal with.
I may call the Rheumy office tomorrow about the bloodshot swollen eyes. Hopefully it's just a cold.
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