Tuesday, January 5, 2010

2010 Kickoff

We had our infusion yesterday and all went smoothly.  Gary tolerated the IVIG well this time.  Last month he had a bit of a reaction.  LEVELS  levels came back great.  Yes, of course I celebrate this but we are still having active skin issues.  We saw the dermatologists today.  He said exactly what I thought he would.  The rheumatologists say that the new rash he has had since September is not JDM related.  Dermatologist said it is.  He said they would be in contact with me once they get together and discuss.  He was thinking of suggesting we up a medication.  I was thinking it was a good he said it was JDM only because I didn't want to hear "I don't know".   We talked about how great his levels are but the small things that I have noticed, like poopen out at the top of the stairs or when I lift him he doesn't feel as tough as he was, like his arms are going to fall off at the arm pits.  That was confirmed because he had unusual bruising in his armpits.  I told the dermatologists that I understand his levels are good but I am in contact with other JDM families who have seen normal levels, but disease activity.  I told him I am not trying to be negative or make things they are not.  I have just seen what this disease could do.  The disease seems to have technique to sneaking in behind enemy lines and stricking.  I just want every possibility considered and treated.  I had posted a vent on the support board about not knowing.  Not knowing if Gary's voice just changed to a low pitch raspiness.  It sounded like he was whispering.  It returned that afternoon but it is enough to notice.  I have 2 other kids and a lot going on so when something small like that is noticed, well then, it is note worthy.  I got a lot of good advice from the board.  I am glad it is there.

39 Days left    : (    eeeeekkkkkssss   till the 26 miler!


  1. Hey girly,
    First off I am glad Little Gary tolerated his treatment well! Yahoo!!

    Next, I am actually all to familiar with active flare skin flare-ups and muscle flare ups and my bloodwork has shown normal but when they do the EMG tests and skin biopsy is shows active DM! It as if all the meds mask the disease sometimes for the levels to show normal! It is sooo frustrating!
    I have the adult DM but I know that when my skin flares the Dermatologist gives me steroid creams and anti-itching creams and ups my steroids and usually the flare subsides somewhat....
    I hope that helps a little!

    Oh and when my muscles get weaker they always up my steroids too! I know that is not what ya want to here.... I hope he gets in Remission REAL SOON!

    I always have ya'll in my thoughts and prayers....
    What is the DM board? How can I find that?
    Hang in there....
    Happy New Year, sorry such a long post, hope I helped a little and your like the best Mommy EVER!
    Summer :0)

  2. Go Mama Tiger! I am so proud of you for fighting for Gary. It is hard and frustrating, but it is definitely rewarding. You inspire me running the marathon! I will be there cheering you on. As far as Gary's disease process I am glad it is getting better. I know there are still many concerns and we pray for him daily! The voice change is something we deal with also. Luckily, it hasn't done it lately.

    We are praying for Gary and your family daily and Kya is definitely his prayer warrior. If anyone forgets to pray for Gary she tells them. Including the preacher, grandma, papa or anyone who prays!

    I can't wait to see you guys in Austin!

  3. You are right, the disease can be active even with normal muscle enzyme values. Given his young age and small size, his values should run at the lower end, or even below, the normal range for a given lab test when the disease is deemed to be in good control. It is a very difficult job as so many factors can influence the various lab values. The lab values are just one piece of the puzzle ... your motherly instinct/intuition is another ... the doctors' assessments are yet another. Keep asking questions and try to be informed as much as possible.