Tuesday, October 5, 2010

So angry!!!

When Kevin pointed out the Emily felt warm on Sunday night I was surprised.  Because Enbrel & Methotrexate both mask fevers, I had gotten used to her not having them.  Since Orencia does basically the same job as Enbrel but in a different way I wondered if it, too, would mask fevers.  I know now that it does not.  Because she was flaring so badly- by then completely couch-bound, getting up only to use the restroom- I kind of hoped that maybe it was just from the flare.  She doesn't seem sick, but then again, she never does.  So, instead of rushing her to the children's hospital last night after the forehead probe flashed 104.4F at me, I decided to wait until today to figure out what to do.  It responded to Motrin and was back down fairly quickly, and she seemed very stable.  I figured there was no point in waking up our rheumy when they would just be using her as a pin cushion, anyway. 

As soon as we got up today I called her pediatrician.  Their computer system was down, but when I explained what was wrong, the med assistant says "I can't even see what's on the schedule so can you come in now?"  Sure!  My thought was to rule out infection so her rheumy couldn't blow us off, and also to get our pedi to call him since he won't return anyone else's phone calls. I got the newer, more conservative doctor.  She is still learning, but she's okay.  She's one that only likes to prescribe oral steroids yearly or upon dying.  I can understand that.  They are harsh, can cause brittle bones, can mess up internal organs, make a child gain a ton of weight.  Even she agreed that she would give steroids to my bean.  She said that she couldn't see any infection, though it was possible that there was something viral.  She had a viral infection the week before we met the Congressman, which was Sept. 13.  Anyway, she called our rheumy and he actually talked to her!!!  I was shocked.  He wouldn't even call back the nurses on the same floor as his practice last week, and we were there for 2 hours.  Anyway, he wanted to see her, so we made a 1PM appointment.  Somewhere something got lost in the translation because somehow I was under the impression that we were going to the Infusion Room.  That would mean IV Solumedrol, which would be a wonderful choice at controlling the inflammation.

I should have known better.  He did a thorough exam and could definitely see the inflammation, but decided that she probably had strep that just couldn't be seen yet.  The new nurse practitioner (who was an infectious disease nurse) asked me what lab we use, but then he popped up with "I want her to see her pedi on Wednesday for a throat culture to check for strep."  Okay.  Hmmm.  It gets better.  During her exam he noted that her eyelids were really pink.  He also noted a spot that she's had on her elbow that I always think is an RA nodule.  It has gotten bigger.  Those 2 combined with different areas that were causing her pain, and then looking at her labs he determined that she most likely has Juvenile Dermatomyositis.  (Why not, right?)  I had heard of it, but I hadn't read up on it before because it didn't apply.  Now that I've read up it makes sense.  I had been wondering if there was a muscle issue going on because often she would point to non-joint areas and say they hurt.  The symptoms?  Weak muscles, fatigue/ lack of endurance, stomach issues, weak voice... a whole list that just makes sense.  I'm not sure what it was in her labs since by this time my head was spinning, but at some point he & the NP decided that there was *something* in her labs "that's not good".  Judging by the context I assume it was myositis related, but I'm not 100% for sure.  They also said that this can be why her white cells keep crashing.  They are still too low to go back on her MTX.  And finally, they mentioned an MRI, but I don't remember if it was the elbow, the knees (where she has flexion contractures) or where.

So, after he left the room I realized that we hadn't settled on anything to help her MOVE.  We called him back & I asked him about a round of steroids.  I don't want to give my baby narcotics, though I do have a bottle of Tylenol with Codeine in it from Zach's arm break.  I would rather give her something that will control the inflammation.  Nope.  "I really think it's from the strep, and after she's on antibiotics she'll feel better."  Okay, I had pointed out before that after 9 days her Orencia vanished from her system and left her like this, and since this dosage was half the first it would make sense that it would wear that much more quickly.  He was totally focused on strep.  I was ticked off that nothing would be done for the pain, but what could I do, right?  Sometimes it takes me a while to get really angry.

So, I get home & start reading different things, talking to people.  I have a friend that was telling me how when her son with JA got strep, it was in his eyes, & it can cause full-blown inflammation.  Her rheumy & pedi worked together to treat it, using a month long course of alternating antibiotics, IV & oral steroids.  My jaw probably dropped when I read that, thinking wow, we got brushed off.  But then I read this: , which is info on the myositis.  I about lost it when I got to the treatment section.  "
What is the treatment for JM?
There is no cure for JM yet, but there are treatment options to help manage the symptoms. Early and aggressive treatment is usually the best predictor of a better outcome of this disease.
IV corticosteroids (Solumedrol) are usually the first line of treatment for JM. This is oftentimes coupled with high dose oral Prednisone, another corticosteroid. Since the side effects of corticosteroids can be very troublesome, Methotrexate (a chemotherapy drug when given in higher doses) is usually introduced early to allow for tapering of the corticosteroids.
Other common treatments include Cyclosporine and Intravenous Immunoglobulin (IVIG). Less common treatments, but still used include Cellcept (chemotherapy), Enbrel and Remicade.
These medications all have their own side effects, but the most common ones for Prednisone are: -increased appetite and weight gain -rounded face -mood changes -high blood pressure -stretch marks -fragile bones and bone damage -cataracts -slow growth." 

Can you feel the anger?  Really?  So, despite really not looking forward to the drive, I am finally angry enough to have decided to try a rheumy 3 hours away.  Why?  They are the next closest ones.  Pediatric rheumy's are a rare breed!  One doesn't have many choices!  Maybe then we will have proper treatment, we will not be brushed off, we will have phone calls returned when you tell them your child cannot get out of bed, and her issues will actually be addressed.  I really didn't want to switch.  As a person, I really like her doc.  I absolutely adore the nurses!  They are so sweet, such good people.  You can tell they really care, and they are genuine.  All 3 of them.  But I can't let her live like this, either.  She has:  RF+ (adult type) Juvenile Rheumatoid Arthritis, Scleroderma (linear- skin only, they say), Raynaud's Phenomenon, Myositis, & Mixed Connective Tissue Disease.  The only thing being treated atm is the arthritis... kind of.  I pushed for calcium channel blockers for the Raynaud's so she wouldn't get frostbite in school again and was denied.  There are other meds aside from MTX that can be used for Scleroderma, but not for us.  And now it's just deal with the pain???

My head is still spinning.  It's been a long day with a lot to absorb, and I'm still angry, but I have to be up soon.  I think I'm too angry to sleep, but I guess I'll have to try. 

1 comment:

  1. I can feel your anger momma!! I would have been angry too! I think you will have much better luck at Shands [I assume that's where you are going]. My phone calls get returned same day. It may not be as fast as I would like it to me, but I also understand that they see a lot of patients so the fact that they even call back the same day is fantastic to me!! It's hard to leave what you've known for the unknown but if her current rheumy isn't LISTENING to you, well then, you do what you have to do to make that wonderful little girl feel better!! Love you! Lemme know how your first visit with Dr. M/Dr. E goes.