Friday, October 15, 2010

Fridays Appointment with the Rhuematologist

So today we saw Dr. Vehe. We talked a lot about 2 different meds, Remicade infusions and Humira injections. I think at this point we are leaning towards the Remicade vs the Humira because of the fact Dr. Vehe thinks the Remicade is more effective for the Uveitis. They are IV infusions that would have to be done every 4 weeks at the Childrens Hospital in Minneapolis so that means more trips for us. We have a week to check with our insurance to make sure they will cover the infusions and then make a final decision. He also made a point to tell me a side effect of both drugs that was quite scary to me! Both these meds can cause Leukemia and Lymphoma!!!! Yeah so I am really not liking this:(. With the Humira its a 3% chance and with Remicade its a 8% chance. Which Dr. Vehe reassured me that even 8% is very small and very rare. I am still very un easy about it. So I think I will be up late tonight doing some research!
The knees seem to be doing ok but the joint in one of his toes was very swollen today he said. So he thinks the new drug will help that. We didn't get rid of the Naproxen as I had hoped.
Jackson will have blood work within the next couple of weeks. He will see Dr. Bothun (for the eyes) Nov. 17th. And be starting the infusions within a couple weeks.
Thanks again for checking in!

Thursday, October 14, 2010

quick update

Just a quick update on yesterdays appointment. I was expecting the bad news of the eye has not improved but I was completely unprepared for the news that that it had spread to the other eye! Wow what a blow it was to hear that! So at this point the current meds aren't doing the complete job so we will be discussing adding a new med at tomorrows appointment with Dr. Vehe. I did ask Dr. Bothun if we could possibly get rid of the naproxen if we add another med. He thought it was highly possible but I have a feeling Dr. Vehe will feel differently. They don't always agree on the meds. But one of my concerns is all the meds that go into Jackson on a daily/weekly basis. So well see! Currently Jackson is on Naproxen 2x daily, Methotreaxte injections 1x a week, Pred Forte eye drops 5x a day and now adding another med tomorrow along the lines of enbrel or Humura. Too much if you ask me! This is so discouraging I thought we should have made more progress towards remission within 5 months. I have done my best to be so strong and act strong when people ask about Jackson but I am not and I may just loose it now! I have been sooo blessed with some great friends thru all of this. Some of who amaze me that deal with there own children with serious heath problems but yet have the time to call/text to check on my child! I hope you know who you are and you have been sooo great to me! But I don't want to forget all my other friends who have been there for support and thank you to those who have taken time away to ride to the appointments in Minneapolis with me. As little as it seems it is huge to me and soo apprciated!
Thanks for checking in and those who are a constant support to me! I will update after tomorrows appt!