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Thursday, February 13, 2014

Little update

I can't believe how long it has been since I blogged!  Since last I wrote, we have seen the ENT to discuss a plan for the next time she gets sick.  The plan has been that we call ENT when she gets sick to get her in for a culture.  I really wanted them to culture so we could figure out what antibiotic would actually work. While they are in there, they want to suck out the extra crap that seems to never leave her sinuses in her forehead. I'm so over trying different antibiotics and her still getting sick when we stop.   Unfortunately, that time is now but it hasn't all lined up.  They sent the authorization to the wrong fax number, then when our rheumies got it, they only could make out half.  Hopefully since we are at our rheumies now, that will get situated.  She also recently saw endocrinology and had her growth stim test, which she failed miserably.  We have an MRI scheduled for next week to rule out pituitary problems before we start growth hormone.


As of today, Emily has the go ahead from our rheumies to STOP PREDNISONE!!!!!  That is HUGE!!!  She has been on this steroid consistently since October 12, 2010.  She has come a long way!  She started on 42mgs.  She was on the liquid, which is 15 mgs per 1 teaspoon (5mls).  She was on 7mls twice a day, and currently she is on 0.2mls.  I told the doc's that I would prefer to taper, so it will be a week or so before she is fully off.  I am sooooooo excited!!!  So is she!  At this point, the risk outweighs the benefit.  I showed our rheumie the cortisol levels from the growth stim test, and she was floored at how low they still were, despite hydrocortisone twice a day.  The down side is that we have to increase hydrocortisone temporarily, but it is only temporary.  She is still on a plethora of other immune suppressors, but eliminating one is a good start!  No other news today, but if anything else has changed we will know by tomorrow.  Her MRI is set for next Friday, so hopefully we can coordinate ENT before that.

Zach had an appointment today, too.  We have been fighting to get his Enbrel for over a month now.  Thankfully I tend to hoard medicine a bit, so we had some extra.  I've been spreading them out, giving it to him every six or seven days, instead of twice weekly like it's supposed to be.  Apparently it showed.  Our rheumie and nurse practitioner both noted that he has more back pain and tenderness than he should.  If his back is still that bad in 3 months at his next appointment he will have an MRI to see why.  They also pointed out that he is hypermobile.  That is one of those things that I don't (yet!) know much about.  All I know from my fellow JA mom's is that it can be quite painful, and it can cause enthesitis, which is basically like inflammation of the tendons.  Sounds like a good time, eh?  Poor kiddo.  Obviously, all of this shows that he is NOT ready to go off of Enbrel.  In fact, we are also going from Methotrexate pills to the injection.  I am really hopeful that once we get his Enbrel back on track, he will start to do better.  Through the week it's hard to remember that he has arthritis, too.  These are always painful reminders.

I'm doing pretty good.  I'm finally off of Medrol (like Prednisone).  The only down side to that is the neuropathy coming back, along with the joint pain.  While my rheumy feels that my Sjogren's may turn into something else, his nurse practitioner is hopeful that it will not.  I'm choosing to think she is right.  :)  In truth, aside from my right hand going numb every morning, and my one bum shoulder, the worst is the chronic fatigue.  I am always sooooo tired.  That aside, I am holding up well.  I'm thankful that my symptoms are mild enough that they don't prevent me from doing what I need to do.

And that is that.  I will try to find the time to update after the MRI and other important appointments.  Thanks for following!  :)

2 comments:

  1. Wow! Danielle! As I fight daily with symptoms of a mixed variety that went from being diagnosed first as MCTD to RA, Lupus, Sjögren's, & Raynaud's, plus have the "hyper-mobility" as you described (still sounds all pretty mixed to me), yet it is "just myself". I cannot fathom how you deal with your two children being so ill, and watching them go through so much, then to find out that your own body is "rebelling" also. What an enormous amount of strength, courage and fortitude you have. It sounds like these diseases have taken you through a very long line of doctors, medications, & especially the kids with infusions and injections, your two kids are also very strong willed & brave. Thank you for sharing your stories. I certainly will want to keep up with your blog and see how the kids and you fare on this unknown and uncertain journey we all known called autoimmune diseases.

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    1. Thank you, Rhia! It is simply one day at a time here. It's been much easier since we started homeschooling. That has made everything so much easier.

      Do you also blog? I would love to read your story!

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