Wednesday, April 18, 2012

I'm in a spin, Not loving the spin I am in.....

Today, April 18th, was our clinic and cytoxan admission.  Well, it was suppose to be.  Our appointment was at 2:15.  Gary weighed in at 46 pounds.  That is seven pounds in 2 weeks.  It certainly looks like a whole lot more but it is temporary.  His energy is off the charts.  So far off the charts his body isn't keeping up with him.  After physical therapy on Thursday last week, his walk went to a limp drag.  He hobbles horribly.  Complains of no pain, just hobbles faster.  The limp drag and sudden drastic weight gain, reminds me of Quazie Motto.  His attitude remains above the clouds.  Above anyone else's on earth.  He is so very happy.  A few unnatural tantrums have crept in but those far outweigh his sunny disposition that we have not seen.  I couldn't paint a picture with words for our doctor.  Saying he is a new kid doesn't do it.

We went through the regular conversation.  Fevers, no.  Sleeping well.  All is well.  One little detail that I discovered that morning was swallowing.  During Gary's birthday celebration with the family we video taped him while he ate dinner.  I was watching the video and noticed he was grabbing his throat when the food went down his throat.  At the time I noticed but just stored it in my memory.  My memory was tapped into this afternoon before we left.  He was eating chicken nuggets.  I glanced out of the side of eyes and saw him grab his throat and wince.  I asked what was wrong.  He said the food won't go down.  No choking.  No coughing.  Why is it almost painful when things are dismissed?  Not listening.  Dismissing to quickly.   Moving to fast.  Frustrating.  It is a scenario that has played out to many times during the past three years.  Mothers are to be listened too.  This to shall come to past.  If I was the doctor,  I understand.  I am looking at a child that has gained weight, there is no trouble with food making it to his stomach.  This new, as is his limp.  His limp isn't just any limp, its a JDM limp, neither is his swallowing.  Not related.  Especially being pulled off five different medications he has been on for a long time.  I just have to breathe, when I really want to scream.  I know it seems ironic to most people when he is feeling so much better.  Good,  doesn't take away the fact that we have just come of a flare, blood infection, and major med changes followed by symptoms.  Oh what fun! > : (

In order to get our infusion down to once a month, we came home tonight.  We are returning Monday night for Cytoxan, Pamidronate, and Remicade.  Remicade is a little early, but just this once, too get these to line up.  Our new rheumatologist decided to also discontinue his Rituxan infusions.  She felt they aren't working.  On a recent trip overseas and some convention, it was discussed how there particular country doesn't use Ritxuan.  There was some confusion between the doctor and I.  We had previously talked about Remicade being used for JDM.  Traditionally it is used for IBD.  So she asked me to ask my JDM Mom's if anyone was on Remicade for JDM.  So I did.  Not many.  She walked into todays appointment asking about Rituximab which is Rituxan.  She told me they don't use this medication over there.  I would love to through out a so what! right here but I know I don't know the whole story and her whole point.  This will all be cleared up.  This appointment was like being on a merry go round that wouldn't stop.  This transition is proving to be a tough one.

Coming down to 3ml on steroids though.  She ordered a MRI on Monday of his hip to check for necrosis which I heard can happen with high dose steroids.  We are gonna steer clear of the internet until after that MRI on Monday.  No reason to get myself all worked up.  I already am.  I am thankful he is doing well and better and all that.  It doesn't take my fight away.  It does make it easier.  I almost typed it doesn't but really if was very sick or in bad pain, well then, it would be much harder.  My favorite!  Perspective.

Now it seems to me that our doctor is going after these calcium deposits.  They are looking much better so that is a good thing.  Just have to tackle the rest, not just one thing.  I know the doctor realizes this but the whole oh yay, alright, thing just erks me.  You can break it down, explain it, try and help me with my feelings but until you walk in it or even at that, no one can ever put my shoes on, they don't fit.

Gary's Medications

3ml Prednisone
2.25ml Cellcept
2.5ml Tacrolimus
1/2 tab of Hydroxychloroquine
.75ml Methotrexate Injections
25mgs Enbrel Injections
IVIG Infusions
Rituxan Infusions
.8 Enalapril
Folic Acid
Calcium/Vit D
Cytoxan Infusions
Remicade Infusions
5ml Raninadine

Do I approve.  That is what I was asked.  I think taking away too many at one time is a little scary.  I suppose all I can do is go with it.  I asked her when she anticipates taking him off Cytoxan.  She wants him to go at least for six months then we will move him to a home dose of a different immune suppression.  Imuran or another she mentioned.  That will bump us right into Kindergarden.  If she sticks to this schedule, August will be the six month mark.   I guess what I would like everyone to consider is the steroids and "how well" he is doing.  He has proven to really like steroids.  His body responds to prednisone.  I don't want anything masked by the immediate effects of removing these medications.

I asked her if she had heard anything further regarding Gary's blood infection.  She did get the report that the bacteria was not found in the biopsies they took during his endoscopy and colonoscopy.  She doesn't think it came from the dog.  She thinks it came from an infection we saw under his skin.  It was a calcium deposit or a molluscum.  I have lost count of opinions.  

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