Thursday, July 7, 2011


Funny when I hear myself say it.  It takes awhile to determine.  How bad does Gary have JDM.  You know, like, "well he has a mild case".  I always wonder because the comparison is lacking due to everyone is different.  So classifying it is always something I am waiting to hear from them (the doctors).  "So tell me about his history" they ask.  I always replied with moderate to maybe severish.  No official.  Yesterday they handed me an in-take evaluation.  The nurse prints it out for the doctor so he can review his next day appointments.  He grabbed that sheet to give me his email address.  He jotted it down and let me take it home.  Of course I read everything three times that they send home with me.  And there it was on the referral note, Severe juvenile dermatomyositis with progressive hoarseness.  Leaves a mother feeling pinchy.  I don't know what pinchy means but a hurt, dammit numb feeling?

I thought yesterdays appointment would be a open wide, let me look down there a little,  and lets talk.  It wasn't.  The doctor put a tube down his nose to see his cords on the tv.  He had a hard time getting a glimpse of them because Gary was screaming.  It only lasted a minute but that was enough to tick my little man off.  He gagged and cried.

I really liked the doctor.  He was very nice.  He said he caught a glimpse and what he said is he see's inflammation.  His vocal cords are inflamed.  He talked about it possibly being acid reflux.  He said if he had a growth or calcium on a vocal cord, you would be able to see it.  He kept reassuring me with, "don't worry, its nothing bad."  Did I look like I was about freak out?  LOL   The doctor was so sweet, but honestly, I save it for the car ride home if I am upset about something.  I kind of giggled when he kept saying that.  But I very very much appreciated his bedside manner and gentleness.  He said he would write a report up and send it over to our rheumatologist.  He wants to keep an eye on things.  He said he think he would benefit from voice therapy.  Well, alright.  We are not going to put him back on his lanzaporozal until we hear from the rheumatologist.  I told him that the hoarseness started in Nov. of 2010.  In September of 2010 they took him off of the lanzoprozal hoping for better absorption of his medications.  Interesting.

I find it a little funny that the little things they have come up this past year are not really blamed on JDM.  I explained that too him.  That is a symptom of JDM.  Loss of voice.  He said yes, but there are 37 other reasons you can cause hoarseness.  OK.   Really though, lets eliminate half of those right now.   Inflammation is JDM's favorite thing.  Tap. Tap. Tap.

1 comment:

  1. Ericka,
    Hey girl, tt type of procedure is rough on a 33year old so on a 4 yer old I can only is just really uncomfortable and it does hurt a bit whe they try to make you talk wth that thing in your mouth while they are taking pictures and recording! That is great news that it isn't his muscle in his vocal cord....lets hope it is something else that will go away quick! I wanted to tell ou that mine is frm my muscle...when my DM flares my right vocal cord is kinda like paralzied which they call retnoid fixation and steriods helps make it better...when I am not flaring it is fine....when they taper steroids it comes back DM is a crazy crazy Disease...I know were not supposed to hate but i HATE DM! It is really hard to read SEVERE...believe me I know I have that same diagnosis it sucks but we just have to know that we will beat this we will get well lets just hope soon

    love you