Ciara

Thought it was about time I updated the blog on Ciara's JRA (juvenile rhuematoid arthritis). She had an appt. Friday with her rhuematologist. She see's him about once a month. She had some bloodwork done and it showed that her liver enzymes and her sed rate were elevated which is not good and that she is a little anemic. The sed rate lets the Dr know how much inflammation there is going on in her body so when it goes up then he knows that the JRV is getting worse which Ciara was telling him that she felt worse and that she has been experiencing lots of stomach pain. The liver enzyme is telling him basically that her liver is not at all happy with the medication she is taking and something needs to change because you do not want to have elevated liver enzymes or at least not as high as Ciara's are.

And I just want to say here that Dr. Stobie is great. He gives Ciara the most complete examine everytime we come and never makes us feel like we need to hurry along. Are appts generally last 45 min to an hour.

Anyway, so Dr. Stobie wants to figure out which medicine is causing her liver to be so unhappy and changed her off of Clinoril and put her on a new NSAID Relefen. Hopefully, this change will also help with the stomach pain. Relefen is not as hard on the stomach as Clinoril. She will continue with the methotrexate once a week which really dosen't seem to be doing much and is not causing any of the side effects accept mouth sores which is good. And the mouth sores are just a few and it dosen't help that she has braces. Ciara goes back in 4 weeks to see if the change in meds will help the liver enzymes go down and also how she is feeling. If the liver stays the same then she will probably have to go off the methotrexate if they go down then he will increase the amount of metho she is taking and he also will probably start her on a new med that you may have heard about from TV Enbrel. This is a really good med for JRV but Ciara would have to give herself a shot twice a week which believe me she is not happy about but Dr really wants to get her JRV to stop progressing and hopefully decrease. Apparently Enbrel is very, very expensive in the thoughsands of dollars range. Dr asked what kind of insurance we had and we are very blessed to have amazing health coverage. Dr even said "well make sure your husband doesen't quit that job". Yes, I am very grateful for a husband who gets up at 3 every morning to go to work so we can have this amazing health insurance.

So, we are now just waiting for the next 3 weeks to pass to see what it going to happen. Ciara is still a real trooper who never complains, gets up at 5 every morning for seminary (because she is so slow in the mornings it takes her a good hour and 20 mins to get ready) and she has only missed 3 days so far this year and one of those was because we were out of town. I am also blessed to be her Mom.

Hope you are all having a great day, week, month etc. Love to hear from you.