A Parent’s Story & Creative Solutions

After knowing for years that something was wrong but not having enough to go on to prove it, my pediatrician suspected that my then 5 year old had Juvenile Arthritis.   It took a long time to diagnose her- almost a year!

Eventually she was also diagnosed with scleroderma and mixed connective tissue disease.  Her new rheumatologist had recently put her on Naproxen and Methotrexate to help manage her pain and inflammation when we first noticed other changes.  I went in her room to help her with her socks when I noticed that she had one toe that was bright white.  By the time I called my husband in to look, it was back to normal.  A bit irritated with me, he went back to what I was doing like he didn’t believe me.  The next night he called me into her room.  This time, her whole foot was white.  As we were sitting there trying to figure this out, it started to change to purple.  Needless to say, we panicked!  I called her rheumy the next day, and they said that it was most likely Raynaud’s.   Eventually they were able to see first hand in the office, though just in case, I take pictures of her bad episodes and show them in the office or email them to the nurse.

What started off as a few episodes from time to time has increased enough to have us and even her school developing frantic rituals.  She has many episodes during a day.  We have drills in place.  You see, here in Florida they have “open air hallways” at our schools.  To go almost anywhere at her school she has to go outside.  Her classroom is up on the second floor.  To get to her lunchroom she has to walk down the outdoor steps (or now she takes the elevator) and walk to the front of the school.  This would give her a hard time, as does being outside for recess.  In her classroom we keep rice filled socks to throw in the microwave to heat for her.  Instead of running up to her classroom for her socks, we have rice socks all over the school.  We also keep large quantities of hand warmers in her backpack.

Last winter was very, very cold for us Floridians!  During winter break, my children still went to school for child care while my husband and I went to work.  During one particularly cold day, I went to pick her up in the afternoon and noticed that her hands looked really purple.  They top of one was actually cracking, and they were both very, very swollen.  She couldn’t take the cap off of a marker even after they warmed up.  When I showed her pediatrician, she said it was a case of minor frostbite.  FROSTBITE???  She didn’t even go outside!  She stayed inside of the heated cafeteria with her mittens, and her very thick, heavy winter coat.  She had on long pants, a long sleeved shirt, and 2 undershirts.  How could this happen???  Later in the year everyone was a little ticked off when the school raised the thermostat on their A/C system up to 75F.  I cried it made me so happy!

I had asked for Raynaud’s treatment from her rheumy before, but he had blown it off.  After the frostbite he gave us a nitro cream to try.  We tried that a few times, but for a (now) eight year old child in school, they use hand sanitizer constantly!  The cream never had a chance.  I’ve tried pushing the issue since with her rheumy, but I’ve gotten the “Let’s wait and see what happens”, or “well, I don’t want to do anything right now since we’re changing her other meds.”  I guess that he doesn’t worry because her fingers aren’t pitted.  I worry because my little princess that loves to wear beautiful dresses is now confined to a life of long pants- even in the hot, humid Florida summer.  She can’t go swimming unless the water temp is up around the 80F+ marker, even in kiddie pools.  We had volunteered at my son’s Cub Scout camp this summer.  They put out little pools for the girls that had brothers whose parents were helping.  On a 95F degree day they brought her to me swaddled in blankets and towels.   We had tried to explain to people how serious her conditions were but no one quite understood.  That helped them to see.

My girl doesn’t like having extra attention called to herself.  Some days she just chooses to ignore it.  I’ve tried to explain to her how serious it can be, but she is, after all, still a little person.  It breaks my heart to see how she struggles.   I am completely in awe of her, amazed by how well she handles everything that is thrown at her.  I have only met one or two others that are affected by Raynaud’s, but their cases weren’t as severe.  It scares me!!!  I strive to make people more aware.  I started blogging to call attention to her medical problems.  So many people don’t know about Raynaud’s, Scleroderma, JRA or MCTD.  It is my job to lobby for her, and to teach her how to advocate for herself.  We are blessed with many opportunities to prove to our children that we will fight to the ends of the Earth for them.  These diseases have brought our family closer together.  I know that it will continue to be a struggle, but we will continue fighting and seeking awareness.

Thank you for the opportunity to share our story.  I believe that these personal stories can really help people that are struggling, newly diagnosed, or people that have a loved one affected.  Thank you for helping the cause!!!

D.T. from Florida

Editor’s Note:  Dr. Thomas Lehman of our Medical Advisory Board points out that there are a variety of treatments available for children with Raynaud’s and is surprised this child was not offered one.  Parents of children with Raynaud’s should seek counsel from a pediatric rheumatologist.