We've had an exhausting few days!  Daphne started unconsolably crying on Wednesday (for six hours straight) and was continuing to cry on Thursday.   We had an appointment in Baltimore for Daphne's feeding clinic, but ended up taking her to the ER at John's Hopkins.

To make a very long story short, we eventually found out that Daphne had a small epidural hematoma.  Thankfully, it was nothing life-threatening, and no surgery was needed because Daphne already has lots of space around her brain, from moyamoya related atrophy, which leaves plenty of room for swelling.  We are back home, now, and Daphne is feeling much better, although not herself.

We plan to send Daphne's CT to Dr. Steinberg, who -  along with Teresa - was wonderful throughout this whole ordeal.  I was surprised by how quickly we were able to get a hold of him, and that he took the time to talk to us and several of the doctors who were taking care of Daphne.

I wanted to also share, though, that we ended up taking Daphne out of John's Hopkins, against medical advice, and driving her to Children's Hospital of Philadelphia (her usual hospital).  It was absolutely crazy!  First, the neurosurgical team at Hopkins told us Daphne had an epidural hematoma, and they'd need to operate, then they decided that the imaging was only showing the muscle overlay from her moyamoya surgery.  For many reasons, this made no sense to us (and it turns out that we were right)... plus, we had a parade of residents, all coming in to see "the moyamoya patient", prying her eyes open, poking her ears etc.   After more than eight hours, Daphne never got fed, and never got an IV. And the list goes on and on!!!

I now appreciate Children's Hospital of Philadelphia so much more.  I know Hopkins has a great reputation, but it was absolutely the worst hospital experience we've ever had (and Daphne's had plenty of experience -- I think this was her 26th hospital admission)

Sorry for the long post!!  Just had to share :)

Jenny (mom to Daphne.  18 months old, seizures at 3 months, strokes at 15 months, diagnosed with Moyamoya and underwent bilateral surgery this March)

HI Jenny, it's Susan, Jaime's mom.  I'm so sorry you had such a frightening experience this week.  We live 40 minutes from Schneider Children's Hopsital at Long Island Jewish Medical Center, where all of Jaime's neurosurgeons are (they've been her doctors since she was 3 months old, she's 14 1/2 now).  We also live 2 miles from Stony Brook University Hospital.  There have been times when we've required an ambulance (grand mal seizure related) for Jaime and had to go to Stony Brook.  Under no circumstances would I ever permit anyone to treat her in any manner at Stony Brook.  Like you, I would sign her out (and have told them that) and take her on my own to Schneider's where they all know the deal.  The last time I went through the ER w/ Jaime at Stony Brook, I heard the doctor on call say to the resident "this mother stated her daughter has "moyae - moyae" disease and that can't be right, so find out from her what she meant to say"!  What I had to say to her regarding her remark and insensitivity, I'll leave out.  CHOP is an excellent hospital (we've been there for consultation with Dr. Shutt in 1992) and you absolutely did the right thing by bringing Daphne.  I'm greatful to have a facility so close for stabilization, but there is no substitute for the doctors who know your child so well.  I'm glad Daphne is okay - you are both in my thoughts and prayers daily.  Thinking of you - cheer up.