Tuesday, January 31, 2012

Another good rheumy appointment for both

Yesterday was a very long but good day.  Taking two kids to the hospital for 8 hours isn't really my idea of a good time.  It's rushed and crazy when you're taking one child, but two presents a whole new challenge.  Thankfully I have some really great kids, but it's still difficult.  Filling out everyone's paperwork, getting drinks and snacks, just getting settled!  I brought the laptop, foolishly thinking that I could get some work done.  In reality my son used it more than I did.  It was a great distraction since he was kind of driving me crazy.

For once we stayed at a hotel.  I didn't want to have to get up at 4 A.M. to drive up.  Not with 2 kids.  The morning went just as planned, except that I didn't sleep.  Emily's new antibiotic isn't doing a whole lot, so she was coughing most of the night, which kept me up. I was afraid that it was waking her up, but in reality she actually slept.  We got up on time, packed up, had time for breakfast and got to the hospital with time to spare.

The doctor saw Zachary first.  Despite us keeping the other staff in the loop, he didn't know that Zach had only just received his Enbrel in the mail.  He had thought that he would have had 2 full months on it by this point, but in reality he only had one full dose.  We could see that the Methotrexate is doing what it's supposed to be doing.  His jaw pain has been minimal, and the psoriasis plaques look much less angry.  Still present, but not terrible.  Again the doctor noted that Zach's hands look like Emily's... without the steroid swelling.  It really is curious.  I pointed out that the psoriasis is trying to take over his joints.  He didn't really say much about that other than agreeing with me.  We agreed to keep on the same track with him as we are, making sure we get him in to the opthamologist and have his labs repeated in two months.  His liver enzymes are up.  His ALP and Sodium are off, too.  In reading up, it looks as though a low ALP often shows a Vitamin D deficiency, and many people with autoimmune issues are vitamin D deficient.

Emily requires much more time, so he left and came back to us.  That gave me some time to call her ENT and see if we have a surgery date yet.  Apparently they hadn't thought about that yet, so they scheduled it with me on the phone.  We are set for February 22nd for the first procedure and March 13th for the second.  Our rheumy was upset that she hasn't consistently been on one antibiotic for 21 days.  I need to make sure if either of my 2 little children has an actual sinus infection that they stay on antibiotics for a full 21 days.   I pointed out the red dots that she keeps getting.  It's really strange.  He said that these spots look like spots that some people get when their white cells crash, but hers look good.  Very odd.  Thanks to the ENT's calling for surgical clearance, they ran the immune system panel.  Honestly, I feel that she should probably be on monthly IViG, but I don't want to bring it up.  I don't want to pump more into her than we have to, and she's already on a ton of medicine.  We discussed that her ankles, knees, hips, wrists and back have been flaring mildly in the joints.  Praise the Lord her muscles are quiet!!!  We also discussed her sinus problems.

So, I am blessed with pediatricians that realize that I know what's going on.  They LISTEN to me.  They may not always agree which is fine- they have the medical degree, so we try it their way.  But they listen.  Since November Emily has been on :

Septra- (Sulfamethoxazole-TMP)  January 27, 2012
Augmentin 600MG - January 19,  2012
Omnicef 250MG-      January 13, 2012  (Again did nothing but make her more sick) 
Augmentin 600-         December 28, 2011
Clindamycin HCL-    December 14, 2011
Omnicef 250MG-      December 11, 2011  (Did nothing- she got sicker)
Augmentin 600MG - November 28, 2011

When the last round of Augmentin stopped working midway through, I called and begged them to please give her one more round of a different antibiotic to hold us until her surgery.  Foolishly, I thought the surgery would be a week or two.  Knowing that Augmentin wouldn't work, nor would Omnicef, I asked for either Clindamycin or Septra.  I prefer Clindamycin for 2 reasons:  because Zach & I are allergic to Septra and because Septra can increase the toxicity of Methotrexate.  In English that means that this antibiotic could make her one arthritis/ myositis med work too well, like at a higher concentration.  So, I told them that I would be willing to discontinue her MTX if they prescribed Septra.  It is a triple antibiotic, and she hasn't used it ever, I think.  Our rheumy's biggest concern was that it wasn't prescribed for long enough.  I asked him if I should give her the MTX at a half dose, but he said not to worry because she has so many other meds going.  Of course, she actually likes her MTX, unlike most kids.  (Dermatomyositis causes severe itching, but the MTX decreased it a lot.)  Moral of the story- he gave us another prescription for 15 more days of Septra.  He believes that her arthritis is acting up because of the sinus infection, and once that finally clears she should be better.  I had figured that, too.  It's nice to be on the same page.   And that was about the gist of it.

Today, we were all exhausted.  It's a very long day, especially because first they do pre-meds, then SoluMedrol takes about an hour to infuse, Remicade takes about 3-4 hours, and Rituxan is set for 4 hours.  She's wiped the next day, but so am I.  Even Zach was wiped.  We did almost nothing today, but I did make her go to therapy.  And she cried a little because stretching is so hard, but overall she did very well today. 

I can't tell you how amazed I am with her, how in awe of her I am.  She will correct you if you call her medicines the wrong name, she will spout off the list of her meds, she will talk to you like she's a doctor, but at the end of the day she's acting like a cute squirrel that just wants to be petted.  She is truly such a joy, so sweet, so wise.  I am so blessed.  <3

1 comment:

  1. We are so very blessed having you and your family in our lives. I am glad there is some progress and I hope things go smoothly between now and em's procedure. And it is very promising to hear that zach is improving already even without full dosages on board yet. That brings much hope for the near future. Love you