Monday, January 3, 2011

Today's Doctor Appointment

Bevin had an appointment today with her Pediatrician to look at her ear and feet and see what was going on.  We’ve been putting OTC creams and lotions on the affected areas, but nothing is clearing up.  It looks as if what’s behind her ear is Refractory Eczema (hard to control eczema).  She now has some prescription strength hydrocortisone cream which will hopefully clear it up.


It seems the peeling on her feet is associated with her JRA and seems to be flaring up when her JRA does.  We actually first noticed her feet around late May of 2010; we brought her in to the doctor for it on 06/15/10 because we thought it was athletes foot that wouldn’t clear up.  Her regular pediatrician was out, so we saw someone else who told us it was an allergic reaction to the plastics in her shoes and that you couldn’t get athletes foot until you’d hit puberty.  Of course changing her shoes and using athletes foot cream were of no help.  This also leads me to believe her JRA started back at that time.

After reading some other blogs and the situations people have had with doctors (finding one that is understanding, works with you, etc), can I just say I am more and more appreciative of my kid’s pediatrician.  Dr. Cutts is absolutely wonderful.  When he walked into the exam room today he told me “I know you are here for her ears and feet, but how is everything going?” and then sat with me for about 20 minutes listening to my questions, concerns, etc.  He is not her Rheumatologist, but he allows me to call or e-mail him with all my concerns about Bevin’s diagnosis.  If I haven’t liked the Rheumatologists method or answer, I can ask him.  He has been completely forthcoming that Rheumatology is not an area of expertise for him, but he answers everything to the best of his ability and I feel like he truly cares about Bevin.  He provided me with some info on the new Rheumatologists coming in once the current one retires (they are both from Oakland and will be purely Pediatric Rheumatology, apparently the current Peds Rheumatologist sees Rheumatology patients as well as regular Pediatric patients.  Not that being a specialist and non-specialist makes him better or worse, but the two new specialists will not see anyone except Peds Rheumatology patients because they are purely specialists and not PCPs).  He (Dr. Cutts) also informed me that out of all of his patients he only has two with JRA, Bevin being one of them.  The other is a teenager who was not his patient when he was diagnosed.  This makes me feel like Bevin has a little place in the back of his mind being the only infant JRA patient he currently has.

Dr. Cutts also went over some of the other drug treatment options as it’s been 4 weeks and the Naproxen still isn’t having any affect.  Because he isn’t the Rheumatologist he will not be the one to move her to a different drug, but he knows I am concerned about the Naproxen not working and wanting to know what the next step is.  There aren’t any in-between drugs between the Naproxen and the more serious drug treatments for JRA.  He informed me the most common “next-step” would be Methotrexate (MTX) which is used in the treatment of Cancer as well as autoimmune diseases.  It’s scary to think Bevin may end up on a Chemo drug for arthritis, but based on all the other JRA kids/blogs I was able to find, this seems pretty common; steroid injections are also a possibility.

And rewinding back to Thursday night (12/30/10) we had a slight glitch.  Our brand new (less than two weeks old) heater decided to stop working, putting our house at 60 degrees and it was only 7pm.  Because the cold stiffens Bevin’s joints that much more, not being able to keep the house warm was just going to make it worse.  Luckily my parents live a mile or two away and we were able to drop Bevin off for a last minute sleep over with her Nana and Papa.  The HVAC install guy came the next day and was able to fix it (apparently it wasn’t draining properly and due to all the condensation the new system produces, with the extra water build-up it wouldn’t allow itself to turn on).
 On our way to drop Bevin off with Nana and Papa (who have a working heater)


Bevin’s also had some bruising on the inside of her left foot, but it doesn’t seem to be too significant and seems to be gone by the end of the day (althou it’s usual present again in the morning).

On a Hayden note, today he was moved up to the next class at his preschool, as of today he is officially a "Square" (he was a "Triangle").  Yay Hayden!!

And so this new year starts our new adventure…

I hope everyone out there had a wonderful New Year’s!

3 comments:

  1. Just started following your journey and blog. Thanks for sharing your story with us.

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  2. It took us years to go for a heated mattress pad, but it was one of the best decisions that we made. When my daughter gets up in the morning now, it doesn't take an hour for her to be able to move. It has made a huge difference for her.

    Methotrexate sounds very scary, but also remember that for JA patients the doses are much, much lower than for cancer patients. Also, they have been using MTX safely and successfully for over 15 years for JA. It is also used for Chron's, Dermatamyositis, Scleroderma, Psoriasis, Eczema, & other auto immune conditions. The hardest thing to get past is the fact that you have to inject *your baby* with a needle. (See how well that goes over for a while!) You have a great start going, and some awesome support, it sounds like.
    P.S.- I read Gracie's Journey. I cried pretty hard, but thank you for suggesting them. Wow is all that I can say.

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  3. My daughter who is 13 too have the same thing behind her ears. She has JRA too , but she takes lots of MTX and steroids so its pretty normal. Hope you kid is doing fine :)

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