Now what..

Well, the doctor was in bright and early this morning.  He has done a great job with Spencer and I really appreciate all the time he has put in to finding answers. 

The good news is that Spencer's brain scan for tumors, lesions or abnormalities in the lining of the nerve sheathing all came back normal!  Whew! That leaves the problem with his palate, disappearing gag reflex and throat pain more than likely mitochondrial or possibly autoimmune but the steroids haven't helped at all so that's not as likely.  So, we are back to no treatment, no cure.  Though it hasn't been confirmed by the Neurologist, it follows the pattern of mito problems.

The stomach and vomiting issues are another perplexing issue altogether.  The doctor said what Spencer has is not Gastroenteritis or 'stomach flu'.  He said that when his immuno compromised patients have to take high doses of steroids, it overwhelms their system and causes "malignant vomiting" which is what Spencer has been experiencing.  So the steroids, combined with the fact he ate 7 slices of jalapeno pizza without his pancreas medication just shredded his entire GI tract.  The doctor doesn't think things will resolve until he is done the run of steroids.  We still have 8 more days of steroids!!  Once we finish those, there will be more testing and more stuff to figure out how to get Spencer back on track with his health.  Shelbie has sort of taken the spotlight this year with her chronic immune problems but in the background, Spencer has been suffering just as much but in different ways.

I am bringing Spencer home today and we are armed with pain meds, anti nausea meds and hopefully the vomiting won't come back.  He is barely able to eat even a couple bites of toast without getting totally sick. 

The doctor reiterated the fact that kids' metabolic system is really not functioning well and whether that is all mitochondrial or some other genetic breakdown, it remains to be seen.  He had a big conference with an Internist and Radiologist yesterday and they all feel like bigger things are brewing...but what?  So, the mystery continues!

It's so hard to hear that!  It's so hard because I have to change my mindset.  I tend to wait before taking the kids to the doctor; keep hoping that things will resolve and then we end up in a crisis like we have this week!  It stinks.  It blows my mind.  You would think after 19 years of this, I would be a little further along the learning curve.  It's so hard to find a balance between, 'this will pass' and 'it's time for the hospital'. 

Now, my instinct is to go home, clorox my house and anyone who darkens my door!  I want to quiz anyone who comes around, make sure they aren't dragging germs along with them.  Basically, I'm all about keeping them in a bubble.  This week has just about done me in!  I know that is totally impossible and irrational but setbacks like this really make me feel crazy and out of control. I know it will pass but for now, I'm hyper alert!




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