Friday, September 17, 2010

Another mystery solved

 Have you ever just completely overlooked the obvious?  For a while now I've been trying to figure out what is causing Emily's "itchies".  She will tell me sometimes that she's unbearably itchy, and even the bath doesn't help.  So, I started researching.  Looking at other autoimmune disease, especially those in the rheumatic spectrum.  I went to Medical Prescribing Reference, a site for doctors that tells all about each meds.  I wanted to see what else Methotrexate was used for.  She begged our rheumy the last time that we were there to let her go back on her Methotrexate injections.  She's probably the only child in the world begging for a shot!  However, she knew that it helped as the itchies would come back when she stopped it.    Thanks to a friend posting a link to another friend, I get it now.  I have known for a while that Emily has scleroderma.  I have focused greatly on her arthritis, and often I have focused on the Raynaud's, like when her tongue started turning white.  However, I haven't worried too much about the scleroderma, except when it comes to her hands.  Even then, aside from the MTX there isn't much we can do about it.  Since she doesn't have the systemic forms, I pushed it aside.  And then I saw these videos.  I do believe I have much more to research now.  I have researched it in the past, but it was more before she was actually diagnosed.  We had a few months of uncertainty while we waited for lab results.  (They turned out negative, by the way.  It wasn't until a year later that he decided, labs be damned, her hands definitely have scleroderma.)  Scleroderma patients are much more likely to have Raynaud's than arthritis patients.  Raynaud's as a secondary disease is actually worse and has more side effects than when it's a primary disease.  Nothing about this child is easy when it comes to her medical health.

On the brighter side, her pediatrician (whom I love dearly) finally decided that I had a good idea every year when I ask for asthma preventatives before my kids get sick.  She & my son both get sooooooo sick this time of year.  Last year we were in there almost every week from September to March.  Maybe this year we'll be better off with the preventatives in play.  She put them both on Singulair, Xyzal (similar to Zyrtec) Qvar, (like Advair, an inhaled steriod) and nasal spray.  There's never a dull moment!  Since they've been back in school they've already had that throat thing that's going around and my son had a stomach virus.  They've only been in school since mid-August! 

Well, it's game night with the hubby & some friends  :)  If you have about ten minutes to learn, please follow the link at the bottom here.  Please have a box of tissues at the ready.    I needed them.

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