Things that I wish I had known in 2008

Today I got the books that I have been waiting for!  I haven't started "Myositis and You: A guide to Juvenile Dermatomyositis for Patients, Families & Healthcare Providers" yet.  The second book, "A Parent's Guide to Rheumatic Diseases in Children" (written by Thomas J.A. Lehman, M.D.)  had some other things that I wanted to focus on before I got completely absorbed in the myositis aspect.  I have spent many countless hours researching different diseases that affect Emily, trying to figure out what applies and what doesn't, what to look for, etc.  This "Parent's Guide" had a more detailed section on Mixed Connective Tissue Disease than I had seen before, including a section on MCTD with DM.  I settled down figuring that it would be all news that I've read already, but hoping to glean a little something new.

Terms to know first before moving on:  ANA is the AutoNeuclear Antibody test.  They take your blood, they look for a pattern, & then they keep diluting until they no longer see the pattern. The dilution is how they get the titer.  The more times they dilute and still see the pattern, that is how high the titer is.    The RNP is the test for MCTD.  I'm not sure what the RO is.

The first thing that hit me was in the very first paragraph.  I realized that I had actually read it before- it just hadn't sunk in.  It says:  "Children with MCTD are ANA positive like children with SLE (systemic Lupus) but typically have high titers of antibodies to RNP as well."  Three paragraphs down is "A high-titer, speckled-pattern ANA is characteristic of MCTD.  When the ANA subtypes are checked, children with MCTD are usually RO+, RNP+ & Sm-.  Because these children are often RF+, they may be referred for juvenile arthritis."  Ok, Rheumy #1 first saw her knowing that she was RF+.  Said rheumy knew that she had a high titer speckled ANA+ result in April 2008.  She already had Raynaud's showing up then, which is a classic symptom, followed by Scleroderma tightness of the skin.  And yet, he never, ever checked for the RNP or even said MCTD until this past June. This makes me a little angry.  Had I known that she had MCTD, I'd have researched it.  Had I researched it, when her legs first started hurting I'd have looked into it more.  She couldn't really seem to tell me where it was hurting from.  I suspected it may be muscles, but not for a while & that didn't make sense. 

What else hit me was when I read how children present.  Apparently, most kids with MCTD don't get JDM.  That I knew before, and if I remember right, the actual statistic is something like only 5% of the healthy population gets JDM, and only 5% of the MCTD population (which is almost as tiny!) gets JDM.  I guess usually most kids get the features, not the full disease.  This had me pondering as well.  So, I start looking at typical JDM onset.  There are 2 groups.  Those that are "unicyclic or monocyclic", who have a gradula onset and progression of the muscle weakness & rash.  And then there are polycylic.  These kids may have the same start as the uni kids, but they have the hands more affected, the nail folds & capillary abnormalities.  She's a poly group.  Just as rare is her start- "A small percentage of cases begin with dramatic fever, rash, elevated muscle enzymes, & profound weakness".  Rheumy #1 first said "Hmmm, looks like a little myositis may be going on".  Until I asked for oral steroids to control inflammation.  Then all of the sudden it was "I really feel that she just has a case of strep.  I know you just came from your pedi, but I think you need to take her back there in 2 days and have them run a culture".  BS!!!!!  I KNEW the fever was from it!  When you've been through enough stuff like this, you may not have any concrete proof, but you KNOW if it's another happy autoimmune disease finding a new home or it's just bronchitis.  I knew that when I mentioned fever he would tell me to take her to our pedi.  That's why I went to them first!  UGH!  This book is bringing all of that anger back again. 

The last thing that got me?  When it said that children with significant Raynaud's need to keep it under control, and can easily do so with calcium channel blockers.  I specifically asked Rheumy #1 for them, and was told to "let's wait and see".  I may have to buy another copy of this book and send it to him.  He obviously has a lot to learn.  Yes, I will let go of the anger again soon.  This just made it fresh all over.

Little side note- When I changed my blog address the other night I kinda hoped that it would auto-update in Networked Blogs, but not so much.  Just an FYI to any of you bloggers that may be considering a change- you have to pretty much start everything over.  UGH!  I'm a little bummed, but I know that this is a safer option. 

When I started blogging, I never intended to have anyone actually read it.  I didn't take a lot of safeguards, and so I used my last name.  I try hard not to complain in real life, and I know that I am very blessed despite all of the turmoil around me (like in the post I put up last night!).  I wanted an arena to vent, to let it all out.  Damn it, it sucks that my little one has to go through so much.  It's so unfair to her, and it makes me sad.  But I also try to  stop and smell the roses every day, take comfort that there's always something better waiting around the corner.  I feel like this whole life is just a test; once it's over you move on to your real life, like it or not.  But I also think that it's healthy to vent.  Through writing I can think things through.  Maybe someone else out there will understand how it feels to be filled with so much joy & happiness, yet so much sadness at the same time.  My own life- excluding everyone around me- is really pretty lovely.  I have fun at work & enjoy my co-workers for the most part, I have a happy household, children & a husband that I actually like as well as love, & my health isn't bad.  I don't have a lot of wants or needs, so I'm good there.  I have all of my needs met.  Who can ask for more?  And then I look at how Em suffers, how Kevin will be suffering.......  Joy & sorrow.  I feel so alive!

Oh!  One last thing!  There's a new Non-profit group out there dedicated to raising awareness for AUTOIMMUNE ARTHRITIS!!!  This is very exciting!  Several of us had recently switched more to this terminology because people don't understand.  Autoimmune is when the immune system attacks itself.  Surely that doesn't happen by Grandma playing too much shuffleboard!  While I love Grandma and respect her degeneration from old age, her body is falling apart- not attacking itself.  I'm sure that most people would agree that is an accurate statement.  When your immune system (you know- the one that keeps you from getting sick) decides to rebel, you really never know what's going to happen, but I can guarantee it won't be a happy party.  Just sayin'.  Here's the new group!  

The "Buckle Me Up!"International Autoimmune Arthritis Movement