Tuesday, January 26, 2010

Check UP

Last post was a check-in, this post is a check-up :).

Gary had a check up with the rheumatologists today.  Overall, I think the appointment went well.  I have 2 sisters.  We are close.  I find myself to be a bit more confident when one is at my side.  If both are at my side well, you really just don't stand a chance.  Today my younger sister came with us to the appointment.  Words flowed and points were proven.  In the past couple of months I kept getting the notion that Gary was just doing fabulous from the doctors point of view.  My view is that he is doing well, but not at level that would make me unzip my bag and pull out the pom-poms.  In fact in pervious posts I tried communicating that I was a bit on the frustrated side.  Ahhhh the nature of the disease.  They should label "frustration" as  a symptom.  A few weeks ago, Gary's labs came back great.  Mostly normal.  They were happy about that.  I was and was not happy about it.  Despite great levels, he has active skin rash.  Not just the typical JDM rash, but just really colorful, active skin.  On his tummy, the back of his neck, his face and bruising underneath his arms.  Despite levels, he looks like a patient with active Juvenile Dermatomyositis, drug dependant to keep it from doing some real damage.  Tender red hot cuticles that only improve for a moment after IV steroid infusions.  I feel like at today's appointment they finally really saw what I have been seeing.  I can't understand why this makes me feel......accomplished.  It shouldn't.  Do I want to hear that he is fighting it, of course not.  Do I like the worried or concern they seemed to show with everything he has going on, NO I don't.  It makes me want to cry.  But it is a comfort they understand just what I am talking about.  Gary is presenting some weakness.  The reflux that children do when you lift them up underneath there arms has declined I would estimate 60 percent, if I had to put a number on it.  With this weakness returning, it causes damage under his arms.  You can see our finger prints bruised into his sides.  The doctor described it has vasculitis.  Vasculitis is the inflammation of the vascular system.  Not that veins but the tiny capillaries.  (As I understand it.)

This is what the internet says about it.

Vasculitis (vas-kyu-LI-tis) is a condition that involves inflammation in the blood vessels. The condition occurs if your immune system attacks your blood vessels by mistake. This may happen as the result of an infection, a medicine, or another disease or condition.

Gary was done, but the appointment was not.  He would not let the doctors touch him.  Hitting, spitting, kicking, whacking, and smacking come into play.  So Mommie took over the exam.  We were trying to get him to open his mouth which is never very successful.  But this time Mommie layed him back on her lap and said, "Say Aww".  They got a clear shot!  On the roof of his mouth was the same vasculitis looking rash sort of thing that the doctor saw right away and pointed out to the other doctor.  I had noticed that a week or so a go when he had taken a sip of orange juice, it stung.  Some of his medications can cause mouth ulcers.  I went looking around in his mouth for the mouth ulcer.  I did not find one, but did notice the roof of his mouth looked funky.  I don't know what I am looking at so I wasn't alarmed.  I especially don't know what the roof of my own mouth looks like.  Do you know what yours looks like?  Me either.

So as of right now, we watch.  We have upped all his med's and that was only 2 weeks ago.  They want to give those doses enough time to take full affect.  I couldn't agree more.  I told them I would just keep watching closely.   It's that whole, "Hmmmm" look they leave the room with that is just so..................interesting.

Thursday, January 21, 2010

Checking In

Gary is doing good.  Our next appointment is Tuesday for a check-up or in with the rheumatologists.  Our next infusion is on the 8th.  He is still having skin activity and some funny bruising under his arms.  The bruising I know is from when we lift him up.  His arms or whatever weakness he has in muscles around that area causing bruising in his arm pits.  We try to lift him from his bottom.  Other than that the rest of his strength seems to be good.  We have been using ice for his fingers here and there.  He finally started sleeping a bit better the past couple nights.  We have had a busy start to the New Year.  Tuesday night we made dinner on the dash of the car. No I am not kidding.  Running between cheer and basketball, I put together our whole wheat bean burritos right there in the car.  We are keeping busy.

Wednesday, January 13, 2010


Today was our infusion.  Gary went to bed last night in a bad mood.  Woke up in a bad mood.  Throw some steroids on top of that, and look out.  My poor little guy.  I felt so helpless as a mother. Thank heavens for cheeseburgers (that will make sense in a moment).  After Gary's pulse he lost it.  He lost it like I have never seem him lose it before.  I remember the very first time in the infusion center and listening to a young man screaming at the top of his lungs.  I could hardly believe it was us this time.  I don't remember what set him off but suddenly he was screaming stop it at everyone (me, the nurses, innocent bystanders).  He screamed with intense fury.  With great effort he swung, scratch, hit, pitched kicked anything he could get his hands on.  I was calm but in awe.  A small little guy with no hair and an ng tube in his nose was in the next room over.  Gary screamed with like fireworks on the forth of July,  "SHUT UP BABY!  SHUT UP!!!!!!"  

Oh my.

What do I do?  I tryed everything.  I tried hugging him.  No touching.  He eventually ended up on the floor, throwing himself about threatening to pull his IV out.  I asked the nurse to please double check the correct dose of steroids was given.   She quickly went to check.  It was the same as he has always gotten.  I then asked her to maybe page the doctors and see what they think.  He has been mad before and hard to deal with before, but nothing like this. 

Then the lunch tray came in.  I quickly snatched it from the nurse and lifted the top to show him his cheeseburger he had been asking for all morning.   I showed him the ketchup and how he could dip his fries in it.  He went from 90 miles an hour to about 25 miles an hour in 15 seconds. 

Cancel that page to the doctors. 

Now those were some serious steroid munchies.  I just needed something to reset the switch.  Thank you cheeseburger.

Angry Cheeseburger

Tuesday, January 12, 2010

Back for an infusion

The doctors called today to discuss the direction we head in now.  They want us to come for an infusion this week, again.  Since we upped his other medications, they are going up on his IVIG dose as well.  So we must return for the rest of our dose.  They will also pulse him again with steroids.  We will return to our regular scheduled infusions once a month in February.   We go in tomorrow morning at 8:45.   The doctors meet every week to discuss there cases.  It was determined that given the inflammation that exsisted and his rash activity, no one is certain we have turned anything off so to speak.  They don't know, I don't know, so we wait and watch.  When the doctor called and asked how he was doing, I told him he was doing great.  He is super boy after pulses.   I did tell him you can tell it is starting to metabolize because his rash and skin just gets slowly redder and prominant.  He starts having more fits.  But then again its hard to tell with being 2 and steroids. 

It is January.  He turns 3 in March.  I will almost not be able to say he is 2 anymore!  I was looking at his bottom yesterday in his scooby doo's.  It is amazing how little it is finally getting again.  I remembered in the summer how his poor backside looked as if it may explode at any minute from all the steroids.  He has gotten taller and the effects of the steroids are starting to fade away.  That makes me happy. 

I ran sixteen miles on Saturday again.  It went ok.  I was extremely nervous but its all worth it!  I am excited and very very nervous all at the same time.  What do I get myself into?  : )  Can't wait.  I am also trying to leave some baggae at home safely.  Translation:  I am safely trying to rid of as much body weight as my body will safely allow.  I figure the lighter the load, the easier the run.  My feet get pretty sore.  I looked as if I am injured when I get out of bed first thing in the morning.  But it just takes a little walking around to get the stiffness to work out.  I ran 4 miles yesterday.  It was probably the best run I have yet.  It was warmer out so that really fuel'd me.  I think we are taking the kids to Austin with us.  It was really important to me that they get to experience this as well.  Our whole family is effected by this disease so they have earned it.  It is important for me to see that they you can do anything you set your mind to, well within reason as well.  If I set my mind to be Shaq and play in the NBA, yeah it aint gonna happen.  But if you have it (the almighty Lord blessed you with it), then put it to good use.  So 2 legs, 2 feet, am I putting them to good use?  LOL.   It will be interesting as always figuring it all out financially.  I worry about that part but it has always always worked out.  Why start doubting now.  I have not told the kids they are coming.  I have said maybe,  maybe not.  I know they are going to be thrilled! A special thank you to Auntie for getting us there, we hope.  Flight loads are already pretty full.  Might have to get creative.  Can you say road trip? I hope we don't have to go that route.  But I am committed!

*Special thanks to the late Michael Jackson for pulling me thru the 11th mile on Saturday.  I would have bailed if it weren't for his song BEAT IT.

I am very excited to get a new kitchen.  I am not excited because I do not have one right now.  The entire contents of my kitchen are in the rec room.  I sit here now with all the cleaners and medications above me safely up high on the computer desk.  We had an unfortunate flood underneathe the kitchen sink.  It soaked the carpet all the way into the dining room. The damage the water caused was beyond us  (underneath the cabinets, ect).  They gutted the kitchen yesterday.  It was interesting cooking dinner last night.  It will be for the whole week.  On the big up,  I get a new kitchen?

Thursday, January 7, 2010


The rheumatologists and the dermatologists have decided to increase a few of Gary's medications.  He is going up on Cell Cept, Plaquinel, and Methotrexate.  Hopefully this will be the magic combination.  Gary is doing VERY WELL right now because he was just pulsed with steroids.  He is like my little super boy!  His strength, his skin are great.  IV steroids really seem to do the trick.  Last month was the same way.  We sha2ll see what he does this month.  If his skin stays quiet and strength stays good, then great!  I will feel like we are putting some smoldering disease out.  The one thing I felt encouraged about was that his current rash is not from sun exposure.  Why do I feel that way?  I guess because I know its not something I am doing or am not doing to contribute.  In the summer time, I always felt anxious while he played in the yard, even under cover.  I know there are still UV rays in the winter but we really don't spend enough time out there.  I could tell if it was summer time the dermatologists really wanted to point

My Conclusion
Gary's levels came back great.  But physically his levels are not an indication of those levels.  So if you are a fellow JDM patient, and I know my friend Summer can testify to this, it doesn't mean all is well!  The next doctor that does a little cheer leader cheer at me when his levels come back good, yeah.   Cute. 

I know he will kill me when he is older for posting this, but I just couldn't help myself. 
My baby boy rocken his scooby doo's waiting for the dermatologist.

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!