Monday, January 28, 2013

Little update

Our little roller coaster is rollin' along.  We went for Emily's first round of Actemra on Thursday.  She says that she doesn't really feel a difference yet, but I think that she is moving better.  We got our hopes up because I found an article that stated many kids can feel the Actemra working within a few hours.  I thought for sure that Em would be one of those kids;  usually if a medicine is going to work for her, she feels it almost immediately.  I still have high hopes that this will work- it just isn't happening as quickly as I would like.  Her hands and toes have been extremely bad, but her knees, hips, back and wrists have been kicking in as well.  She has been back on Mobic every day.  Hopefully when she goes back in two weeks, that round will help.  Actemra is a bi-weekly infusion, which is a pain, but if it works....

Last time, they had ordered labs, then later in the evening they ordered more labs.  I had seen the report from the first set, but I had not seen the report from the last set.  Not only were her inflammation counts down, her muscle enzymes were low.  For a child with Dermatomyositis that had muscle pain and active rash when those labs were drawn, a low Aldolase is weird.  I'm not arguing, mind you.  They took it twice that day.  The first time it was 4.9; the second time is was 3.2.  I still have things to research here, as soon as I can find some time.  They ran another Scleroderma panel.  Something like 62% of people with Scleroderma are negative for the antibody, so I'm not very surprised that she has so many symptoms but she's negative.  Hopefully her MCTD won't turn into full-blown Scleroderma.  We can deal much easier with just "features".

We were home on Friday when my son goes limping behind me in the kitchen.  He was trying to slide by without me noticing, but it's hard not to notice him limping.  His knee was swollen and sore.    It was feeling better by the next day, but still... His knees never bothered him before.  I am hoping it was a fluke and not new joint involvement.

And yet, through all of this I think about how happy my family is together.  I think about how we may be if it wasn't for crazy health problems.  Would we be well if we hadn't had mold in the house?  Would we get along at all if Kevin and 2/3 kids weren't sick?  I am pretty sure that I wouldn't have had the confidence in myself to go back to school.  I certainly wouldn't have the same motivation that I have.   We wouldn't be homeschooling, which I think is really cool!  And we probably wouldn't have a cute new furry member of our family.  (Even though he is a bitey little puppy, he's very loved!)  Yeah, Kevin and I have had a few rough years that I don't know how we got through, but overall I am so happy to see him come home every night.  Who would have thought some 19 years after meeting him that I would still love him?  Or even like him?  :)  Yup, he is my rock and an awesome father.  I thank God for him and the kids every day, multiple times.  I would be lost without those 4.

And of course there are always those that have it worse than us... no matter who you are or what you are going through.  I have shared on my Facebook the story of a boy named Cameron.  About a year and a half ago, Cameron began having seizures.  They couldn't get them to stop, or figure out why he was having them. I believe it was 21 days before he was stabilized, but he was left having to relearn many, many things.  There was some permanent brain damage.  He went home and began the long recovery process.  Just as he was about to "graduate" out of physical and occupational therapy, he was hit with another round.  This past Christmas morning, he began to seize violently.  This time, they had a much more difficult time figuring out how to stop his seizures.  He was on quadruple the amounts of medicines than he should be, but what else could they do?  They finally did stop the seizures.  When they went to take him off of the ventilator, his lung collapsed.  They discovered he had an infection, so he is on antibiotics and they re-intubated him.  They are weaning him off of the ventilator.  However, the doctors still have no idea why this has happened.  He has now defied the odds twice, though he's not totally out of the woods this time.  Please pray for this boy- that he recovers, that he retains his fighting spirit, that he does not give up.  Please pray for strength for him as well as his family.  He has a twin brother.  Can you imagine being that brother???  I can't.  Please pray for him and their other siblings.  I believe that boy is still alive because of the awesome power of prayer.

Saturday, January 12, 2013

Another new med coming our way

This appointment went a little more like I expected last time would be.  We have three different rheumatologists working out of our clinic.  We have pretty consistently seen the one male doctor the for the past year, mostly because of the days that we have made our scheduling.  We don't play favorites- I think that they are all fantastic.  However, sometimes there are situations that I feel one really needs to see the doctor with the most experience for, or at least get a second set of eyes for. 

This past six weeks Emily just went downhill.  No, it wasn't nearly as bad as 2010 when she was too tired to roll over in bed and crawling to the bathroom, but it was the worst flare that she's had in a while as far as joints and muscles are concerned.  I am just happy that we got her throat stuff under control before this flare hit.  Every day for the past six weeks something new has hurt.  The pain in her hands- most notably her thumbs- has been the most significant.  One of our occupational therapists had ordered her new splints, and started wrapping her in KT tape to give her added support.  She has still felt pain badly enough to want to rip off her thumbs and toes.  Then her ankle, thighs, knee, shoulders, and wrists decided to kick in, with the occasional shout out from her hips.  The month was miserable for her. 

I had hoped that we would see the head doctor this time, but I didn't expect it because she has been doing a lot of research related work.  I was so thrilled to see her come our way!  I have missed her.  :)  She's just so sweet and caring.  (They all are, really.)  She agreed immediately that Orencia isn't cutting it.  We are going to give Actemra a try.  I had expected this before we started Orencia, honestly.  Actemra was first approved for the Still's Disease (SJIA) kids; recently it was proven effective and approved for poly JA kids.  Since Emily is a mix of things, I am hoping that this works well.  She should be set to start it in two weeks.

The hands are posing more than the usual concern.  We had an MRI scheduled for her hands, but they said that it would be 1 A.M.- a day and a half after the order was sent to them.  We stayed all day today waiting for it, but we just couldn't wait for them anymore.  We're already changing meds so it won't affect treatment; they just wanted to see why they are such a mess.  Our other doc says that her hands are much more scleroderma now than arthritis.  Not what I wanted to hear.  It makes sense, I know.  I would just be more comfortable thinking it was "just" arthritis.  

One thing that I found interesting through this is that her labs look awesome.  You would think that as much pain as she is in, as much stiffness as she has, as much as the rash is coming back out in her knees, elbows and around her eyes, her labs don't show it at all.  I asked the doctor if it was just because we were two weeks later on the IViG this time than usual, and he said likely so.  But one would think her labs would show it.  No elevated inflammatory markers, no elevated muscle enzymes.  Weird.  Awesome, but weird.  This is good to know for future reference.  I know that many adult rheumies assume that if your labs don't show inflammation, you don't have any. 

So, we go back in two weeks to try Actemra, and we hope that the MRI works out in the near future.  And for now, I am going to pass out in my own bed.  I have to be at work in a few hours.  I'll keep ya'll posted!