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!

1 comment:

  1. Wow- that's all I can say right now!! Sara you are so good at staying on top of things, I am certain if anything can be done now (to secure an accurate diagnosis) it will be done, because of your efforts. Definitely continue persuing answers, just because the doc's scribble something down doesn't always mean that's all there is to it. Good work. Hugs to you & little Jackson...