Journal entry by Leslie Cavanaugh

Day +116 
(...or almost 4 months.  I sound like one of those moms that says her 2 year old is 104 weeks)

So I think I FINALLY learned my lesson.  No more bragging on how well Alyssa is doing until after a sufficient amount of time has maybe a week.  For the umpteenth time after posting positive news, Alyssa (again) made a liar out of me.  I’m starting to take it personally at this point. We got home on May 31st. (See previous  post) Exactly 24 hours later, she starts to feel bad.  Really bad. Fever, headache, nauseous, body aches, etc.  By Sunday (June 2) we are in the ER in Louisville to see what’s up.  After numerous and prolonged testing, it’s decided...there’s nothing wrong as far as her lab work is concerned.  These symptoms continue daily for the whole week, but she does typically start to feel better by late afternoon.  By the following weekend (June 8-9) she has hit a wall.  Feels terrible, not eating, zero energy, and lays on the couch sleeping for DAYS at a time.  More lab work is scheduled for Tuesday. At this point, I’m insisting that regardless of lab results, she needs to be seen.  We head to Cincinnati on Wednesday. By this point, she looks and feels absolutely horrible.  Dr. Nelson takes one look, listens to her complaints and is about 99.9% sure her problem is related to her steroid wean.  Especially in light of the fact that every test under the sun was done on her and NOTHING came back (which was, at least, somewhat reassuring).  She’s given an IV dose of steroid at the office and then moved to the hospital for observation.  The plan is to put her back on a steroid (a different one this time) and start the weaning process all over again, and do it MUCH slower this time.  Alyssa has something called adrenal insufficiency.  It’s caused by her being on such a high dose steroid over a long period of time. And even though she feels like it was a long, slow taper to get off, apparently it was just too high of a dose and she came off before her body was able to make its own cortisol.  She received 3 IV steroid infusions while in the hospital and within 24 hours, she was like a new person. She was discharged Friday (yesterday) morning.  So the plan now is, back on steroid at what they call a stress dose for 1 week.  Then it will SLOWLY be weaned down to a maintenance dose.  She will be on a steroid for probably 6-9 months.  That about sent her through the roof when she heard that, as she was literally down to her last day of prednisone. Dr. Nelson has assured her that this steroid (hydrocortisone) and the maintenance dose she will be on, should not cause any of the symptoms like the prednisone did...mainly her chubby cheeks, mood swings, insatiable hunger, etc. If he’s lying, I’m pretty sure she will hunt him down and hurt him.  

So, we are back home now. And while I dare say she’s feeling better, I’m not about to say that she’s doing great. Nope, not going there again.  She’s fine (that should cover it). She goes back up to Cincy next Friday, and after that, she should be cleared from medical appointments for quite some time. Damnit, I did it again...”she will be cleared from medical appointments as long as she remains in good health”. There, fixed it.

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