I have had a lot of little ups & downs this weekend. I learned a neat little fact. Did you know that "the incidence of Juvenile Dermatomyositis in the United States is approximately 3 in one MILLION children per year"??? She can't catch a break but she can develop all sorts of rare diseases!!!
The more I read from my books & compare to Emily's previous lab reports, the more amazed I am at how long the Juvenile Dermatomyositis has likely been a factor. One thing that we have never been able to make any sense of I think I have figured out. Before Emily was diagnosed with JA, our pediatrician discovered that her liver enzymes were elevated. All summer and into the next school year we went for labwork every six weeks. Her enzymes continued to fluctuate over the past few years between normal & high. We had attributed some of this to Methotrexate use. Well, I discovered tonight that those same liver tests are the ones that tell when your muscle enzymes are elevated, as in the case with JDM! No one could have known back then, and she didn't show signs of JDM until this April., so I thought. It is likely back in 2007 her elevated counts were due to Mixed Connective Tissue Disease. MCTD comes with its own muscle inflammation similar to DM without actually being it fully. (Disease features) Her labs from this March were really high. Like, someone should have realized Houston! We have a problem! Especially since April started the downward spiral.. the 3 weeks in a 2 month period where she couldn't walk. However, since the liver enzymes could have been due to MTX, I'll let that one go. For now. I'd like to focus tonight on information.
I have found many things this week that I find very handy! The first is from the Arthritis Foundation's website. This link here is the 100+ diseases that are covered under the arthritis umbrella. MCTD, Raynaud's, Dermatomyositis are all included. Yes, really! For those of us that are unlucky enough to have to deal with JDM, we are blessed to have the Cure JM! team. Their site is very informative, and run by all volunteers. This non-profit was made my families that had children & grandchildren suffering from JDM. One amazing mom recently wrote a case study on JDM. I printed out a copy tonight to enclose with the letter that I send to our former rheumy's hospital affiliate. One of the books that I have been referring to lately was written by a few doctors, but also one of the founders of Cure JM! How did I recognize the name? She's on one of my Facebook boards. Another mom, trying hard to help her daughter take her meds on time & still try to have a "normal" life, invented a really cool pill holder.
Of course, it's not just about JDM. Emily has 5 different types of arthritis. The Arthritis Foundation has done a LOT of amazing things to help find a cure, treat, & prevent arthritis, but also to send children affected by these terrible chronic conditions to camp, as well as the Juvenile Arthritis Conference. (You can make donations to the Arthritis Foundation via my personal page for the walk in our area. Now there's another non-profit sweeping the nation. The awesome thing about them is that they are fighting not just for awareness... they are fighting to change the way that people view arthritis! I had posted their link days ago, but I'm really pretty excited about them, so I had to do it again. My awareness ribbon on Facebook was a blue & red ribbon. One side for arthritis, one side for Raynaud's. My verbage? "Kids get arthritis, too! Autoimmune & arthritis awareness!" The key to changing people's minds is by teaching them that it is an AUTOIMMUNE DISEASE!!! I'm so happy that someone else sees it the way that I do!
And finally... I leave you with a story. Not my story, but a story that has made a huge impact on everyone that reads it. This is the story of Jennifer Schott. Jennifer was diagnosed when she was only about two, and she passed away when she was 26. Without research, without new scientific advances in medications, this would likely be similar to the life that my daughter would have, along with the other 300,000 kids affected by one form or another of arthritis.
You are doing GREAT things Danielle!! Keep up all the hard work!!! And maybe catch a few hours sleep once in awhile :)
ReplyDeleteWealth of info here! Love ya Danielle!
ReplyDeleteHello, this is @AlexaMikaela on Twitter, and the following comment was supposed to show up on this post, but...oh well, it got here eventually, right? I've also intended to comment more than this one comment. Unfortunately/fortunately, I've been very busy with school. Fortunately because I'm able to do school! It's been a long time!
ReplyDeleteAll right, in the next comment I'll post the original comment...
I am very happy to have found your blog! My name is Alex. I'm fifteen, and was diagnosed with JDM in July '05 (less than a month after my 10th birthday). Of course more dx's came both before and afterwords (including Reynaud's). I'm also on MTX and prednisone (yicck!), among many others, and I was on Prilosec also, but my rheumatologist switched it for another because he found something that said it counteracted the methotrexate. I would consider mentioning that to your daughter's rheumy and seeing what he/she thinks.
ReplyDeleteIt's been very difficult for me with JDM, being diagnosed at 10 (looking for a dx at 8 or so, & other health conditions earlier as well), so I can't imagine how difficult it must be for Emily with all of the conditions she has combined. If she ever wants someone to talk to, I'm open. Email, letters, telephone, whatever, I'd be glad to be there to talk to her. I don't know exactly what she's going through, but I know more than most kids do, and I know that can mean a lot when you feel like you're the only kid in the world who's dealing with those things.
As for wheelchairs... we just found a stuffed penguin with black on the bottom of its feet, and at first my mom wasn't sure what happened, and laughed. Then I showed her the year on it: 2005. I had attached "Buddy," who had a jingle bell around his neck, to the back of my first wheelchair to keep me company and provide decoration, and those black marks were from my tires! I also put garland around the wheels, handles, etc, all those kind of things. Depending on the type of wheels/tires the chair has, you might also be able to put on those things you put on bike spokes that make noise when you move. Getting a wheelchair isn't fun, but if you try to make it look fun (I love decorating things) it makes it just a little better. I also notice that people end up staring more at the creative decorations than the fact that I'm in a wheelchair, or using a walker (that's where I am right now, and it is covered in jingle bells and a big ribbon and bell ***EDIT: Now that Christmas has passed, it's now being prepped for Valentine's decorations...this will be fun!***), which makes me feel better having people admiring my handiwork and not staring at me!
You might be tempted to try to keep it clean and neat, but if Emily decides she wants to decorate it (or you could convince her to) I'd recommend taking all those stickers I'm sure you have backing up from all those appointments and put them everywhere they'll stick. Ribbons are in, too. Sharpies...mother's discretion. My mom lets me draw on the stickers, but not on the actual chair. You want to be able to find something to smile about when you look at it, instead of just seeing what you can't do.
Okay, sorry if I got a little long there on my wheelchair decorating philosophy.
Wow..."Your HTML cannot be accepted: Must be at most 4,096 characters." I guess I'll finish in another comment!
Almost done with this comment! Haha!
ReplyDeleteReading your last posts...
I remember the prednisone making me gain so much weight that none of my clothes fit. And the doctors told me not to worry, it was normal, it would go away, and how is that normal to a child that age? It will never be. It hurts.
I remember comparing one year to another...I still do it...and you wonder if you'll do those things again. Your mother says you will, and your doctors make it seem like it, but they never really seem to be straight with you about it. Right now I'm pretty up. I know I may relapse -- I know it's rather likely -- but I'm going enjoy this as long as I can, whether it's a few weeks or forever. I know I'm going to keep walking better, and I may need these AFOs for...well, the rest of my life, but what's a pair of leg braces in the grand scheme of things? No big deal. But I remember vividly wondering if I would walk again, or go to school, or, or, or...and I remember being certain that I would not. Because it wasn't getting any better. And when it was, I was sure it was a trick because things didn't get better. It is hard.
It is hard, and prednisone doesn't help. The 'roid rage is a whole other topic, but...like I said, if at any point Emily wants someone to talk to...or scream at...let me know and I'd be glad to give you my contact info.
Sincerely,
Alex
OH WOW!!! WOW WOW WOW! Danielle I am SOOOOO glad that you and Alex have found each other! I am sitting here with goose bumped skin and tears streaming down my face. Amazing how life works :)
ReplyDelete