Monday, June 28, 2010


We have seen no change in Jackson since he started the ibprofen 5 weeks ago. The last couple of weeks seem to be worse. He is having a lot more pain at night that keeps him up crying and a lot of pain in the morning that he won't walk. The other morning he pulled himself around the house with his arms dragging his legs! By late morning he is usually up walking but if you watch him walk closely his walking is getting worse and you can see he favors the left knee a lot. But he is a trooper always trying to run around and be active. I sometimes wonder if he over does it but I want him to live and play a ''normal life!'' I called the pediactric rheumatolgist last Thursday morning after some pretty rough nights and he switched Jackson's meds to Naproxen which is stronger. He was also thinking he would end up adding another pain med with it to help. I am very disappointed the ibprofen wasn't working because if we keep going stronger on the meds the harder it is on his body when taking it regularly. But the outcome will be worth it. The doctor also wants Jackson to have a injection in that knee sometime soon and possibly the one toe because the swelling has not gotten any better but worse! The injection should have a significant impact on pain and swelling however it doesnt last forever. You can keep getting more if needed however Mike and I are only doing it this once to get the treatment going. Due to the fact Jackson is so little he has to be sedated to get the injection and we don't want to sedate him often for this! So hopefully we can find the right meds and Jackson will go into remission!

We have been feeling bad for Jackson lately so thought it would be nice to make a fun trip to the cities and go to Como Zoo! He had a lot of fun and keeps asking when are going back! He loved all the animals and we even rode a few rides at the Como Park. This coming weekend we are going to try going on Jackson's first camping trip to Holcombe. I have family that has trailers up there and all Jackson's little cousins will be there to play so were hoping it goes well.
Jackson's 3rd Birthday is coming up on July 11th! He is getting so big too fast!

Thank you again for checking on Jackson and all your thoughts and prayers.

May god bless you all!


Friday, June 18, 2010

Jackson had x rays and blood work done on Monday. The x rays showed no damage to the bones yet which is good. It did show inflammation in the joints affected. In the x rays they saw it in both knees, we have only been aware of one knee. They may cause them to change his diagnois from pauciarticular to polyarticular. His platelet count is back down to normal. He does have a high sed rate in his blood which is normal in kids with JRA. His hematocrit is low, they didn't eloborate on this yet though. But his labs for his kidneys are good, this will be checked on a regular basis to make sure the high doses of meds aren't affecting his kidneys. We still haven't heard back from the Ped regaurding his partial collapsed lung so I called again today and she just left vacation so I guess I will have to keep worrying about that for another 10 days!
Jackson is still having a lot of pain and a lot of episodes where he wants to be carried everywhere. I have been tempted to call the Doctor several times but I am trying to hold out the full 6 weeks. But it is hard to watch him suffer everyday!
We are now having issues with the getting charged double the co pay for each doctor appt. due to the fact the U of M Hospital sends 2 bills. This has been a nightmare for me that I may be forced to switch doctors and Hospitals. I don't want too but with all the co pays racking up I can't afford to be paying double just because they can't put the bill on one bill to satsify the insurance company! So well see what happens Monday.
On a good note Jackson has been enjoying the summer. Playing outside and we went to the circus last Wedneday. He loved it, he even rode on the elephant.
Thats it for now. Thank you again for checking on Jackson!

Monday, June 7, 2010

The things Doctors don't tell you!

After every appointment Jackson has I get a letter in the mail. Its a copy of the letter he sends to Jackson's Ped here in Eau Claire updating her on Jackson's condition. So last week I recieved the one from Jackson's Rheumatologist appt. on May 26th. Some of the stuff has me very concerned and I don't remember him going over it in the appt. I plan to call Jackson's Ped this week and go over it with her and see what she thinks. One thing is from his MRI that was over a month ago shows Atelctasis of the left upper lobe in his lung, which basically means collopsed lung!!! This concerns me a lot, it does say in the letter that this is somewhat concerning to the doctor and maybe he should have a chest xray. So I will be insisting on a chest xray to be done in the near future. It also says that there is a disease called Common Variable Immune Deficiency that present identically to JRA and is a consideration given his recurrent respiratory illnesses. Jackson has had pneumonia 3 times one of which landed him in the hospital in 2008. He also has adenopathy (enlarged lymphnodes), this is usually seen in systemic JRA which is not the one Jackson has so I don't know if this is something totally different or if its related. Jackson has been diagnosed with Pauciarticular onset juvenile rheumatoid arthritis with chronic uveitis with synechia of left eye. It is possible over the next 6 months he will progress to be classsified as extended pauciarticular or even polyarticular. They will also be testing him for some other diseases as well. His last set of labs show a elevated platelet count, not sure what that would mean but he will get more labs within the next couple of week so well see if its still elevated.

Jackson still has a lot of swelling, although the meds have helped Jackson sleep better it has done nothing for the swelling. I question how well its controling the pain because we still have episodes of Jackson not wanting to walk. We can't not start any kind of therapy until the pain and swelling go down. As of right now he has a swollen knee, ankle with tibal tendon involvement, and 2 toes. The knee is the worst of all of them.

All in all I am feeling a little worse after reading this letter and wonder why all of this was not brought ot our attention at the appointment. His next appt. is July 12th, the day after Jackson's 3rd birthday, we will be seeing both the rheumatolgist and opthmalogist that day. After a lot of talking I got them both schduled in the same day! Which saves us gas and from making 2 trips to Minneapolis.

I also got a letter from the opthamologist who said his eye has markedly improved since the last exam! Which is awesome. Lets hope by July all the cells are gone!

Thank you to all of you who check this site and think and pray for Jackson!