That's a great update, Dog. Prayers for Haley from here.First, my apologies to all the folks at the Duke Pediatrics & the Duke ER – er, uh –ED for my rant a few weeks ago: y’all did your jobs well, & with professionalism & humanity. I was just a frustrated & PO’d Dad, not seeing his daughter progressing after 5 days + 2 ER-uh-ED visits. (Note: for uh, PR purposes, y’all Dookies MIGHT wanna consider going back to using the term “ER” rather than “ED” to avoid any ‘misunderstandings’. Just sayin’….***
HISTORICAL FYI: in mid-June, over the course of 3 days my 17 year old daughter Haley, lost nearly all use of her legs, then arms, & found it exhausting even to feed herself & chew. She retains full motion & full sensation in all extremities, just has almost total weakness (not just fatigue). She retains bowel/bladder control (thank God!). We’d been to Rex Hospital’s ER (not admitted), 1 week later to Duke’s ED & a 5-day stay at Duke Pediatrics. After further weakening a week later, it was back to Duke’s ED again (she was sent home). Several days later it was on to UNC b/c Duke had no add’l follow-up plan (hence my rant), where she was given a "diagnostic admission" for 4 days.
Oh, there were 4 or 8 or 23 DR app’ts mixed in this timeframe (it's all kinda a blur. Haley is SUCH a great kid, tender-hearted, kind, not rebellious, and a good listener to everyone else’s problems. She aspires to be a cardiologist (her Dad didn't push her this way, despite his uh, 'vested interest in such, and obviously has no objections .
UNC did some of the same tests & a bunch of other tests & arrived at roughly the same conclusion as Duke: it appears to indeed be a ‘conversion reaction’; where, completely outside the ability of the conscious will, the mind turns on a defense mechanism (in this case, moving) as a result of an accumulation of stressors. In Haley’s case, there were no known stressors beyond what any precocious rising senior faces, except for some marital stress at home and a really funky sleep/homework schedule last semester. I have an excellent relationship with her so I don’t think she’s hiding anything.
The UNC (& Duke) Docs emphasized that this is actually the best of all possible diagnoses; since all other alternatives were worse, can be recovered from 100%, AND that this condition is completely outside of Haley’s conscious ability to control (i.e. she ain’t faking it, even subconsciously). This I can tell b/c she’s working her butt off trying to be more independent.
She no longer needs to be carried anywhere anymore, thankfully, tho’ she can only walk about 10-15 ft with a walker (& me still supporting some of her 105 lb frame). Her (growing) circle of friends has been incredible. Absolutely incredible. She’s already started phys. & occupational therapy (PT and OT) 2x a week and will be working with a unit at UNC called something like “Complex Diagnosis Clinic”, with a woman Dr. who specializes in adolescent girls & fatigue-type issues. They will be continuing to search for organic as well as psychological triggers. I asked for Dr. Gregory House but he wasn’t in the vicinity
Thanks to all the responses & prayers (& some great advice from a few posters…I LOVE this website for it’s sports coverage but also for the huge pool of really intelligent people one can tap for insight & support, even if some of y’all remain PITAs PLEASE KEEP THE PRAYERS COMING!! (for her & for me & her mom)
***However, it is a MAGNIFICENT conversation starter and tension-breaker.
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Fri Jul 27 2012, 05:06 PM #10