Saturday, September 13, 2014

The Bad, The Good, The We Shall See

Last time I updated my sweet baby boys blog.....can't remember.  I think I was getting tired of nutritional advice or something.  Still on the fence, but getting there maybe.

Recently we just got out of the hospital.  The catch up for anyone who reads this but not sure if anyone does and that is A ok, is we started a new medicine.  This new medicine is called sodium thiosulfate.  It is for the calcium deposits.  This is where the good and the bad come into play.

The Good
The good is Gary's dermatomyositis seems to be.......shhhhh.....quiet.  Dare I say it.  Nail fold capillaries look good.  Muscle strength is good.  Rash and skin are just fine.  Labs,  good.  They are holding to near normal.

So with Gary's dermatomyositis seeming to be under control we have proceeded.  We have proceeded on to trying to get rid of the calcium deposits dermatomyositis left behind.

In April we landed in the hospital for a week with a infected calcium deposit.  At that time we had the opportunity to do a X-ray survey.  That means they took pictures of his entire body to survey just how much calcium he has and where.  We talked about the next step.  Because now we are dealing with a new problem.  The problem is his dermatomyositis is clinically off.  (In my opinion).  Now his body is left dealing with these deposits it has left behind.  What is it going to do?  It is going to get frequent infections. Like a sliver in your finger or on the bottom of foot.   It is going to put puss and infection around that sliver to push and purge it out of your body.   You can quickly realize why that becomes sort of a problem and no fun at all for a seven year old.  These big chunks of calcium, all over his body, that are not suppose to be there.  Infect them out.

It has however been explained to me that since we started this new medicine which is in theory suppose to dissolve the calcium, it has created the opportunity for germs to be introduced.   Because calcium dissolving wants to come it does.  Through a hole in the skin that it makes.  An open wound that drains calcium.  Not cute or pretty but nothing from my son is gross or yucky.  Text book yes. Yes, not in my world!  Never will I ever say, "eewww gross".   EVER.  I will never make my child feel like that.  Ashamed or embarrassed over something he has absolutely no control over.  Over something that chose him.    I am getting off track.  So the opportunity for germs like staph to enter are numerous at this points.  Because the good, is sodium thiosulfate doing what it is suppose to?   The bad, immune suppression and frequent infections make for a bad recipe.

We were back in the hospital of May (Memorial Day Weekend) for a fever that would not go away.  It made us nervous but in the end, after almost 2 weeks of fever, it finally stopped.  That was a difficult weekend.

It took months and months but after the April elbow infection, we all agreed to give sodium thiosulfate a try.  Amazing work by his doctors.  I am so grateful for their dedication and determination they put into my son.  I am not always happy but 95 percent of the time,  I will sing their praises!!!

Sodium Thiosulfate
They had never given it to a child at Seattle Childrens Hospital before.  We were the first.  Yes, it was a little scary but with Gary's JDM ok, I felt confident.  I want these deposits gone!!!!!  They are disfiguring.  They draw attention from children and adults alike.  Some cause discomfort.  Some don't.  But it is in my opinion that they can't just stay there.  If it were my body, I would want me to do something to help.  If there was a remote possibility of them magically going away.  Then give it to me!!  The sodium thiosulfate has been given to a few other patients.  They all report it helped.  The first infusion was rough.  It made him throw up.  The second again two.  It took us a few weeks to get him so he felt alright.   Zofran first, tylenol and benedryl by mouth next.  Then the hour infusion of sodium thiosulfate.  Three days a week has been rough.  It kind of kicked our summer out the window by what is one summer?  We are talking about a lifetime here.  A lifetime being free of the disease and its effects.  So its worth a shot.

9 weeks In
About 5 weeks in actually, calcium started coming out from his arms, legs, and hips.  Not a lot but never before has it done this.  We were constantly walking around with bandaids, bandages, pads, gauze.  Because without warning, calcium would some flowing out.  As it exits,  it also creates the entrance.  And that is what landed us in the hospital this week.

Last Friday he started to complain about his elbow hurting.  I thought, "ut oh".  I nursed it through the weekend.  I gave him ibuprofen and did hot compresses.   This is not the first time this has happened. In August he had an infection is his leg on or around a calcium deposit.  It left an actual hole in his leg.  We have seen these before but it still freaks me out.  I mean, as a mother, my mind goes to these places, like, "oh gawd, is his leg going to rot off".  Well, Im not going to stand by and watch that happen!!!!!  Geez.  Exhausting I tell you.  Anyway, a quick ER visit and antibiotics fixed that up.  No swimming or baths for the rest of the summer but it healed.  Back to the elbow.....the elbow was tricky.  Ouch, ouch, ouch but not CRAZY ouch.  So Monday during our infusion I had them come take a look.  I was upset because he had just gotten off antibiotics from his leg.  How could an infection return so soon to any part of his body.  Well, it could and it did.   On Monday they gave him some intravenous pain killer and antibiotic.  They said if it gets worse before Wednesday infusion, call us.  I was happy with that. Until Monday at 1:30 am he spiked a fever of 102.   Another UT OH.  I gave him naproxen and benedryl and decided to let him sleep the rest of the night.  Call the doctors in the morning. I normally would have gone right to the ER.  But with the antibiotic on board I thought it will be fine till morning.  I called right at 8am.  I didn't sleep a wink the whole night.  I cleaned the bathroom,  scrubbed my shower out, and fretted.  He slept all the way to 11am.  At 8:30 they said if the fever returns, come to the emergency room.  I checked at 10am.  He stayed asleep.  98.6.  I was feeling pretty good.  But at 11am, he woke up and began to shiver.   So I started packing.

On the way to the hospital, he was alright.  I stopped to get him a gatorage and a treat.  I told him to drink because they could potentially put him on NPO.  So he drank and ate a little chocolate.  We were five minutes away from the ER and he vomited.  All over my car.

In the ER they were a tad frantic about things but I remained calm.  Three patients came into ER at the same time.  Gary being one of them.  They assess who needs to be seen first.  Gary was covered in vomit, pale and red at the same time, and shaking uncontrollably.  They pointed us and told the other patients to have a seat first.  We were immediately taken back.  They could not get a temperature read on him (meaning his temperature was normal).  But you could clearly see something wasn't right.

All of his deposits were inflamed and huge.  They pushed a little morphin because he was complaining his legs and arms hurt.  They also dumped saline into him fast.  He quickly started feeling better.  Antibiotics were ran right there in the ER.  I already knew we were going to be admitted and stay for a few days.    In the next few days our hospital room was like a sandwich shop at lunch time.  So. Many. People.  Key people however was rheumatology.  We all agreed we needed to try and put a stop to these infections.  So, with JDM being hush hush in his body right now, SHHHHHH, I don't want his freakin immune system to hear this, we are stopping some immune suppression.  (My car once broke down on my because it saw me eyeing a new model of it at a car dealer ship.  Im superstisious so don't say anything).  After five years of methotrexate.  We are no longer on it.  At first they wanted to stop immuran.  I didn't agree.  I say improvement with Immuran. I have not seen anything out of methotrexate.  I would rather give that the cut then one that has kind of proved itself.  He has had other infections in the past and immuran had nothing to do with it.  But methotrexate has.  It has been there since May of 2009.  They convinced me to go down on immuran.  I said ok.  Plug your nose, jump in the cold water with me?  We were sent home on antibiotics after Gary completed an MRI awake.  Loopy but awake.  It confirmed cellulitis in his elbow.  We believe it is what made him sick.

There is no case like the other.  We can compare.  I like that.  But all children get handed a level of severity of this disease.  You cannot take a child who has a mild case of juvenile dermatomyositis, who quickly goes into remission, to another child who rolls in and out of remission, to another child who never see's it.  It matters not what doctor you have.  If you believe that then...........