Tuesday, March 22, 2011

And the Calcinosis is starting to cramp our style.....

After our clinic visit last week on Wednesday, the doctors last words to me were, "lets start thinking about pamidronate infusions."  Okay.  I am good with just "thinking" about it.  Thinking and doing are to different actions.  I can think about running, but that is not going to give me the action of running.  So the scheduler calls me and says, "Looks like we have a list of appointments we need to make."    Uhhhhhh,  ok, whatever you say but I only have one I need to make with you.  I just needed to make a clinic appointment for April.  She started off by asking about X-rays that we had already done.  I was instantly at ease because I knew she was looking at old orders that had not been removed from his file.  My ease lifted instantly and completely disappeared when she then asked about his EKG.  "For what" I asked in a monotone voice.   "Looks like for his next infusion they are going to start............", she continue to decipher notes.  "Pamidronate infusions."    I instantly stumbled over my words, lost my breathe a bit but maintained and explained to her that I wasn't aware this decision was made.  I further explained that has a mother I need some processing time.  Especially when Gary first presented with calcinosis, pamidronate was something they didn't want to do.  It was explained to me that Gary was still growing.  They do not know what this particular medicine will do to his bones while he is still growing.  I can pretty much answer my own questions.  The fact that the calcium his now increasing it outweighs the risks.

The scheduler asked if I would like to be transfer over to talk to a nurse about it.  They called me back an hour or so later.  I explained I wasn't aware that "thinking about starting pamidronate" meant "doing pamidronate".   She asked me what questions I had.  I explained that I need to go through this because I was told it wasn't something they were in favor of when Gary first showed calcium.  I asked if it was the x-rays of his feet and ankles that pushed them to make the decision.  She said the notes did say  he has calcium in ankles and feet.    Ok.   Not much help but I already know the logic behind it.  I hate it but I know it.  I assume that at this point the calcium might start to interfere with his ability to walk properly.  I don't want to assume that it is the calcium that is making his toes cross but it would make sense.

The doctor called me later that afternoon.  I just am...................twirling and dizzy........am I not remembering conversations properly?  Is this a accent thing?  I do admit I struggle with foreign accents but our doc has a fun, easy to understand acccent.   So nooooooo.   She started by saying she understood I was having second thoughts.  "the last thing you said to me was, 'lets start thinking about'."   So I am figuring out we have misunderstanding in communication.  I asked about the xray.   She said there was influx of calcium but its not on the bone.  That means this: Calcium influx in nonexcitable cells regulates such diverse processes as exocytosis, contraction, enzyme control, gene regulation, cell proliferation, and apoptosis.  I would love to explain but HUH?
This is not Gary's xray, but an example of what calcinosis can look like.

I was in the middle of getting ready to take Gary for putt putt golf for his 4th birthday.  I could sit on the bed and stare.  So we are headed out for an EKG this afternoon.  After doing research on Pamidronate, I feel a little better.  I have read "DO NOT USE IN CHILDREN" but they do.  It comes with all the standard warnings.  We will have to return on Thursday to check his electrolyte levels.  Apparently it can dehydrate you and can be rough on the kidneys.  All the other medication he has gotten have wonderful warning as well.  There have been 3 or 4 patients who had success with completely reversing calcinosis. So here goes nothing, something, ?   There goes my sanity.  : (   .  . .. ....    

And this all went down on his birthday.  Thank you God for making him oblivious.  Thank you for letting him  be able to enjoy it.  Thank You for giving us the chance to make this work.  Now, lets keep him running around those bases.


  1. Hey Erika, I was walking and found this little box that read "Erikas Sanity" so I thought I would give it back to you. I had read that you lost it. I know how much you need it :) Love and hugs to you MaMa, for being strong, a great lady and just being you. xoxo Kelle'

  2. OMG Ericka,
    I feel so bad I haven't read this sooner, DM is attacking me with a vengance and they just finished a 3000 mg steroid pulse on me and if my B Cells go up they are gonna give me another Rixtuxan infusion and it has barely been 4 mths the first one hasn't worked...

    Anywho I am so sorry to hear about it being confirmed more calcinosis and having to start this big med! WOw that is enough to give anyone a panic attack reading all the side effects of this you know what is enough to scare anyone silly, but then like they say the benefits outway the risks....
    your a great mommy and I just know Gary and I will get in remission DM is just being a total jerk at the moment

    love ya