Wednesday, July 27, 2011

Enbrel Today

Thank you Summer and friends for all the nice comments!

Today is the day.  I would love to get it over with but I know Gary will not feel the same.  I would not to start or end my day with two shots.  I will be watching the step by step several times.  Enbrel was delivered on ice in a big cooler.  Never had a delivery like that before.  We were able to get the co-pay covered thru Enbrel for six months.  It was a lot of chasing but worth it.  I am nervous to give this one only because the needle is bigger.  The pharmacy at Children's used a small gauge needle.  This one is clearly bigger.  Stinks.

Gary has been doing better.  Our latest battle is he is always hungry but will not eat.  Well, he will if it is the right thing like a donut or tuna fish.  But that's it.  He keeps crying at night he is so hungry but if it is not a particular way or kind,  then he will continue to cry.  Argggghhh.  I tend to think this is a normal kind of thing for kids but with all the medications his seems to be magnified.  I am thinking of getting him to drink on of the kid protein shakes before bed time.  See if that helps.  His new thing is to throw up his medicines.  I always yell, please please don't.   Poor buddy.  But he has mastered gagging.  I wondered when he would catch on.  He is getting older and wiser now.  Darn it.  I gotta find some new tricks!

Another problem I have been keeping an eye on is potty time.  He has been complaining about going number one : (   Eeeekkksss.  I have a feeling he may have scratched it causing it to sting?  I don't have that particular part so I am not sure.  Keeping a very close eye on it.  I have heard horror stories of kids on immune suppression with urinary tract infections and things like that.  Hmmm.  Maybe I will get him in, even if it is just a scratch.  He doesn't complain all that time though.

Yesterday his eyes were very heliotrope looking.  Like my new tech term for a JDM rash?  Talent.

Friday, July 22, 2011

Blog Name Change

Blog name domain thing expired again.  Sick to death of trying to renew so it is.  It is not redirecting either so I will so find out who really cares to read anything.  No worries,  its mainly for me to keep track of treatments, the when and where's of everything.  I informed the one person I needed to so all is fine.  DUMB!  I mean I tend to think I can find my way around a computer and the internet pretty sufficiently, but this one has me stumped.  Again.  So forget it.  I don't have time.

Infusion Wednesday
Big boy had his infusion.  It went smooth.  Awesome nurse.  On top of it.  Tears with IV start but got it in one poke. Raging,  ticked off, little boy afterwards.  We started our first enbrel shot in the infusion center.  It defeated the purpose of teaching me because the pharmacy already mixed it for me.  I know how to do the injection.  Oh well.  It was good to have a nurse watch me do it as a review.  She commented when we were through, "your pretty much a pro".  Yes, yes I am. *Giggles*

I ran into one of the doctors from rheumatology.  She said "hey!  how are you?  how is he?".  I did not bring up the May med increase and the fact I got busted for it.  I am done and over it now.  Tired of talking about.  Although the last time something like that happened, someone said something I didn't like, it took me a months and months to get over, LOL.  And look, here I am bringing it up.  Only for the sake of an example though.  That is completely possible to not drudge up the past for sake of explaining it.    Anyway,  for the first time in 2 years, I forgot to ask for a copy of his labs.  : 0  Serioulsy.  I am shocked with myself.  An example of how my busy life is starting to effect my mind.  I need to be careful with that.  Gary and his treatment are pretty high up on the list.  Not that it is a big deal but I just really couldn't believe it.  I was to busy watching tv while he slept. LOL  Bad mom.

Gary has been having a little trouble sleeping.  Like the other night when he stood at my bedside screaming for what seemed like hours he hated me.  "I hate you  I hate you I hate you. I am sooooo mad at you right now". Over and over again.  I ask all the tender questions, "why honey?" as sweetly as I can but he doesn't even hear me.  So I stop.  He suddenly will snap and say instantaneously, "I sorry Mom."  And that it that.  He hugs and kisses me and snuggles in bed with me.  Swollen swollen face, all itchy, going crazy.  I know he doesn't hate me,  he hates it.  He hates JDM.  He hates the medicines.  Nothing personal.

Infusion Center Bites Sometimes
I usually don't let it in, but on a subconscious level, it gets in.  One curtain over, a nurse was helping a Dad with some procedure on his baby.  I hated it.  The baby cried and cried.  High pitch, low pitch.  No matter, you hear it a lot in there.  But it went on and on.  Well, what seemed like that.  Suddenly, I was so stressed out.  My insides knotted.  I felt hot.  I felt dizzy.  The room was whirling.  I just wanted to scream, "STOP!!". I wanted them to pick him up, give him a break!  I think they were flushing a port and placing an ng tube or something.  I hated it.  I even cried a little.  The nurse came in to do bp check and asked if I was ok.  I desperately wanted to say no but I knew.  I knew that Gary had been through similar procedures.  I knew that it is sometimes necessary.  Starting and stopping again wouldn't help either.  Just getting it done, then its over with.  But maternally it wreaks havoc on my emotions when it is not even my child.  It's a matter of humanity and wanting to scream STOP  just STOP doing that so that little baby will stop crying.  Pick him up,  love him.  All to which I am sure the parents do and did.  It is probably way more difficult for them but they are also really into what was being learned.  He would need to go home and do that by themselves. So crying or not, it had to be done.  Sucks.

I hope Enbrel works and works well.  It's just getting worse. So many of them.  All over his chest, all in his tummy, around his elbows, in his legs.  Tops of knees a few have come, even another on the top of his shoulder.  Some seem smaller, others big.  Above his hips, but not around his lips.  OK  this is turning into some kind of sick,  twisted, rhyming children's story book.  I am gonna stop.  But you get the picture.  No open wounds though from it, as of yet.  Threats of it but they also seem to simmer down when they get to that point.

Friday, July 15, 2011

Clinic in July

We had our clinic appointment.

Think I shared I had a bit of anxiety with this one due to the last appointment but all went well.  Busy day at the hospital that is for sure.  Our appointment was at 1030 but we weren't seen until 1130.  I don't mind.  As long as when I am late, they extend the same courtesy.  They do! They are great (SCH).  The interns were sent in to entertain us until our main doc could get finished with her last appointment.  I made the mistake of saying that out loud and immediately apologized.  The intern doc giggled and said I didn't have to be sorry because it was true.  It was nice to chat with her because she was the same intern who was in on the UP'ing of Gary's meds.  I was completely candid with her telling about the last appointment.  I told her I went home and cried my eyes out because I felt like I should have been less willing.  She nodded like she knew my pain because she had heard or had the same discussion.  She said she wished I wouldn't feel that way but understands this is all so very important.  We are all working to spare Gary from the uglies of JDM.  Not just following what everyone says is not always easy.

Last month when Cure JM visit our lovely city of Seattle, they brought with them the leading experts.  My little  complicated Gary was discussed!  YES!  I knew it.  I was so happy for that.  I am so happy that they did.  It is so great to be able to get that prespective.  As a result, Gary is starting a new shot.  This is the one that was up in the air with tacrolimus back when we started that.  Enbrel.   I actually blogged it, linked it, and new about it.  Our doctor said she didn't remember talking about it with me but I refreshed her memory.  So battle is on with the insurance company. They will cover it but only through a mail order and it comes with a hefty hefty co-pay.  Our family will not be able to cover it.  But it will work out.  We also talked about starting him back on the tummy protector for acid reflux, why they think his voice keeps going.  We got something strong for thrush, so we will try and get that kicked out as well.  They tried to run labs on us again but I assured them  labs were done at the infusion, dig a little deeper.

Overall, where we have been, he is doing well. I HATE the way the calcium looks under his skin. You can see it around his elbows now.  It seems to be more prominent.  Not bigger, just noticeable.  He has few lesion looking spots on a few of them but no big deal, yet.

Maybe Enbrel will be the answer.  Our doc looked at me straight
and said, "we have just about tried everything now."  Well that is just as fun as hearing he has a severe case of JDM.  The best news however, we are tapering back down off of steroids!  Yes thank you very much!  3ml this week, 2ml next week, settling back into 1ml week 3.     Let out a big sigh for that one : )
Joyfully, give it to God

Tuesday, July 12, 2011

Tomorrow we have our clinic appointment. I am going to beg her to please lower his steroid dose. It really has changed his personality from sweet to sour. He is so angry all the time. Least down to 3 ml's.

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.

Wednesday, July 6, 2011

Checking IN

Summer is in full swing.  We are busy.  I completed my marathon here in Seattle.  I am still working on writing up my race review.  We had a great forth of July.  Gary is doing good.  He has been grumpy.  His personality is off.  He seems very angry these past couple days.  Our next clinic check in is next week.  Today we see the voice doctor. His voice has been doing better.  But I am certainly not going to pass on the appointment.  We have had to give him his nystatin for his thrush at full doses this past week.  He has been waking up with white gums.  They are covered in thrush.  But that is also getting better now.  Calcinosis.  Hmm.  What do I say about it.  I don't know.  It's still there.  I thought it looked a little more grainy on the outside of his neck.  Maybe on the inside of his thighs it feels less solid.  He has some off his tail bone that has increased in size.  His cuticles are clearing up.  Still has a jagged a couple nails but overall good.  He has been a little more tired but energy levels are still up there.  He fell asleep face up, like some kind of crime victim, on the garage floor over at Aunties and Uncles.  They came and got me,  and there he was, asleep.   He kept complaining to his cousin, "I so tired".   I think someone is growing bigger : ).   This weekend we have Mommies STP race. The kids are excited because we booked a hotel with a pool.  Remember Mommie kids as you float around for the day, as Mommie pedals 200 miles : )  Excited!   Wanna know what I am not excited for?  That next clinic appointment.  I know all will be fine and I am totally over last months appointment discussion but its still a little stressful.

On the fourth of July, we went up to a pool and swam, played games for the day.  I was in charge of sunblock.  So I had a few different kinds,  and I constantly layer up Gary.   Everyone was putting it on because sun burns are no fun.  Well the can of sunblock  made by Aveeno, Sweat proof, Water Proof, 70 spi or whatever it is,  failed.  Everyone who swam was burnt.  Luckily, I usually layer Gary up with more than one kind.  So he didn't burn.  He also had his sun shirt and big hat on so that helped.  Who knew sunblock might not work.