Cameron is getting a runny nose. I'm hoping and praying that is as far as it goes! Gonna have to watch him closer than I normally would.
He really enjoyed the warm water therapy pool yesterday at the YMCA. He had the shallow end of the pool to himself for about 45 minutes. Then we picked up his dad at work and met his grandparents for supper at Golden Corral.
One more day of school this week and we're supposed to get a little snow on Saturday. Right now, it looks like something is also coming down the pike for Tuesday/Wednesday time frame as well.
Thursday, February 4, 2010
Wednesday, February 3, 2010
Stop this ride, I want off!
We never asked to be on this ride! However, it is a ride we must take.
Psalm 34:17-19 (New International Reader's Version)
Godly people cry out, and the Lord hears them. He saves them from all of their troubles. The Lord is close to those whose hearts have been broken. He saves those whose spirits have been crushed. Anyone who does what is right may have many troubles. But the Lord saves him from all of them.
Tuesday, February 2, 2010
A long winter's nap
He must have been totally tuckered out!! I let him sleep until about 7 PM. That means he was asleep probably 2.5 hours!
As I expected, it was hard to get him in bed... but he finally gave in.
He gets out of school at 12:45 on Wednesday...thinking maybe I'll take him to the YMCA to spend some time in the warm water therapy pool.
As I expected, it was hard to get him in bed... but he finally gave in.
He gets out of school at 12:45 on Wednesday...thinking maybe I'll take him to the YMCA to spend some time in the warm water therapy pool.
Monday, February 1, 2010
Tummy troubles and fatigue.
Cameron complained this morning that his stomach hurt. It didn't seem like it was that bad so I told him to go on to school and to call me to come get him if it didn't get better. He said it was still bothering him and he told a sub teacher about it, but apparently there was some miscommunication and she wasn't aware of the medications or the possible side effects. He stayed the rest of the day at school and seemed ok when he got home. He wanted to do his homework on my bed so I sent him in there to do it. When I went to check on him, he was sound asleep. This is so not normal behavior for him! I think he may also be going through a growth spurt because his appetite has picked up some as well...
I'm letting him sleep, but may end up regretting that decision later tonight.
I'm letting him sleep, but may end up regretting that decision later tonight.
Sunday, January 31, 2010
Sunday 1/31
He had his shots about 3 PM yesterday. So far, no side effects. His appetite is better than usual, but I think he may be going through a growth spurt. He has been in bed since about 8:40 and is still not asleep an hour later... UGH.
Our journey begins
In September, we noticed swelling in Cameron’s right knee. I took him to the pediatrician and they thought it was just due to him having strep a couple weeks before. They said to watch it and let them know if no better. Of course, it didn't get better so they sent us to see a pediatric Rheumatologist.
UK could not see us until February or March (this was the beginning of October!!) They got us an appointment at Cincinnati Children's Hospital on October 14th. This was a blessing in disguise! Since we’ve started down this road, I have been told many times by other parents of children with JIA that Cincinnati has one of, if not THE top Pediatric Rheumatology departments in the nation! We were immediately assigned an entire team of professionals including a social worker, physical therapist, nurses and of course Dr Esi Morgan-Dewitt. They did a full work up and decided to do a steroid injection into the right knee on November 5th. This required him to be put to sleep.
When we got there for the injection, the Dr examined him before doing the procedure and found the left knee to also be swelling. He was taking naproxyn 2x a day at this point. She decided to inject both knees and drew out about 8ml of fluid off the right knee. He did very well through everything. Our biggest problem was the meltdown on the way home once he finally got over the anesthesia and thought he was cheated out of the popsicle they promised before putting him to sleep. (He ate the whole thing, just didn’t remember eating it.) Needless to say, we stopped at Wal-Mart on the way home and bought him an entire box of popsicles!!
Our follow up was on Dec 23. We were given the official diagnosis of "Juvenile Idiopathic Arthritis". It is a life-long condition. There is no cure, but they can get him into remission which is not a permanent remission. He could have "flares" at any time. This also could affect his eyes. It could cause a condition called uveitis. Due to this, we have to be seen by ophthalmology every 3 months to have his eyes checked. No joints appeared to be symptomatic at the time so we decided on a "wait and see" approach.
About a week or two later, he started complaining of pain in his jaws and ankles. Normally, the few times he said his jaws were sore would not have caused concern. I probably would have ignored it. I called the Rheumatology office to get the results of the blood work back from the visit in December and found that his sedimentation rate (the test that shows inflammation) was still 4x the normal limits. I also mentioned the complaints about the jaws and ankles. They made us an appointment for Jan 20. At this appointment, we were trained how to give him injections of Methotrexate and Enbrel. The Dr also ordered an MRI of his jaw and stopped in to check him. She said she could tell the swelling was coming back in his right knee and both ankles were swollen.
Our first appointment that day was at 10 am for the eye exam which thankfully was all clear. We went to the Rheumatology office and did part of the visit and then left for lunch and came back for the rest. We didn't leave the hospital until 7:30 that night after the MRI.
On Saturday, Jan 23, Cameron took his first injections. He has to take one shot of each drug once a week. They gave us EMLA the "magic cream" as he calls it. We put it on where we will give the shot about 30 min prior and it will numb the area. He did great with the first shots. No tears at all (from him either). He had his 2nd round of shots on January 30. So far, no side effects have been noticed.
The medications can have severe side effects which can include nausea, mild hair loss, lowered immunity, mouth sores, fatigue, etc. The nurse told us "Chicken pox for him would be critical". We have to have blood drawn every 4 weeks to watch for liver damage (another side effect) and to see if the inflammation is going down. From what I understand, if he gets any fever, we will have to at least call the Rheum office and/or be seen by the pediatrician. So far we really have not seen anything.
The methotrexate is the same drug used to treat leukemia and other cancers... only he gets a much lower dose. We had to do a pre-authorization for the Enbrel as it is VERY expensive... $250 a shot! Our insurance finally approved it, leaving a co-pay of $125 a month. Our Dr’s office gave us a co-pay card that allows us to have no co-pay for 6 months and then pay no more than $10 a month afterward. It is distributed by the drug manufacturer. Truly a blessing!
We got the results of the MRI which showed inflammation in both sides of his jaw and the joint was starting to show some erosion (damage). The Dr thinks we have caught it early enough to avoid permanent damage to the joint. Time will tell.
So many people are praying for him (and us) and we very much appreciate it.
UK could not see us until February or March (this was the beginning of October!!) They got us an appointment at Cincinnati Children's Hospital on October 14th. This was a blessing in disguise! Since we’ve started down this road, I have been told many times by other parents of children with JIA that Cincinnati has one of, if not THE top Pediatric Rheumatology departments in the nation! We were immediately assigned an entire team of professionals including a social worker, physical therapist, nurses and of course Dr Esi Morgan-Dewitt. They did a full work up and decided to do a steroid injection into the right knee on November 5th. This required him to be put to sleep.
When we got there for the injection, the Dr examined him before doing the procedure and found the left knee to also be swelling. He was taking naproxyn 2x a day at this point. She decided to inject both knees and drew out about 8ml of fluid off the right knee. He did very well through everything. Our biggest problem was the meltdown on the way home once he finally got over the anesthesia and thought he was cheated out of the popsicle they promised before putting him to sleep. (He ate the whole thing, just didn’t remember eating it.) Needless to say, we stopped at Wal-Mart on the way home and bought him an entire box of popsicles!!
Our follow up was on Dec 23. We were given the official diagnosis of "Juvenile Idiopathic Arthritis". It is a life-long condition. There is no cure, but they can get him into remission which is not a permanent remission. He could have "flares" at any time. This also could affect his eyes. It could cause a condition called uveitis. Due to this, we have to be seen by ophthalmology every 3 months to have his eyes checked. No joints appeared to be symptomatic at the time so we decided on a "wait and see" approach.
About a week or two later, he started complaining of pain in his jaws and ankles. Normally, the few times he said his jaws were sore would not have caused concern. I probably would have ignored it. I called the Rheumatology office to get the results of the blood work back from the visit in December and found that his sedimentation rate (the test that shows inflammation) was still 4x the normal limits. I also mentioned the complaints about the jaws and ankles. They made us an appointment for Jan 20. At this appointment, we were trained how to give him injections of Methotrexate and Enbrel. The Dr also ordered an MRI of his jaw and stopped in to check him. She said she could tell the swelling was coming back in his right knee and both ankles were swollen.
Our first appointment that day was at 10 am for the eye exam which thankfully was all clear. We went to the Rheumatology office and did part of the visit and then left for lunch and came back for the rest. We didn't leave the hospital until 7:30 that night after the MRI.
On Saturday, Jan 23, Cameron took his first injections. He has to take one shot of each drug once a week. They gave us EMLA the "magic cream" as he calls it. We put it on where we will give the shot about 30 min prior and it will numb the area. He did great with the first shots. No tears at all (from him either). He had his 2nd round of shots on January 30. So far, no side effects have been noticed.
The medications can have severe side effects which can include nausea, mild hair loss, lowered immunity, mouth sores, fatigue, etc. The nurse told us "Chicken pox for him would be critical". We have to have blood drawn every 4 weeks to watch for liver damage (another side effect) and to see if the inflammation is going down. From what I understand, if he gets any fever, we will have to at least call the Rheum office and/or be seen by the pediatrician. So far we really have not seen anything.
The methotrexate is the same drug used to treat leukemia and other cancers... only he gets a much lower dose. We had to do a pre-authorization for the Enbrel as it is VERY expensive... $250 a shot! Our insurance finally approved it, leaving a co-pay of $125 a month. Our Dr’s office gave us a co-pay card that allows us to have no co-pay for 6 months and then pay no more than $10 a month afterward. It is distributed by the drug manufacturer. Truly a blessing!
We got the results of the MRI which showed inflammation in both sides of his jaw and the joint was starting to show some erosion (damage). The Dr thinks we have caught it early enough to avoid permanent damage to the joint. Time will tell.
So many people are praying for him (and us) and we very much appreciate it.
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