In ER with Ariana

[Guest guest]

Hi all,

I haven't posted in a long time. Ariana (age 11) has RO, 22mm ACM 1,

and an EDS-like condition called Familial Articular Hypermobility

Syndrome. She is scheduled to see her NSG next week and has been

doing really well (for the most part) for a while. We finally got an

IEP for both these conditions and her ADHD, and her PE activities are

modified. The school is really going out of their way to help her.

For the past month or so, Ari has gotten increasingly irritable/moody.

I assume this is because even though she is excessively thin, she is

beginning peuberty, and I've attributed this to hormones kicking in.

Tonight we are in ER. About two hours ago, she started complaining of

sudden, severe neck pain. Prior to that, she was just laying flat in

bed watching TV. She said she felt like the " bone in the back of my

head is going to push through my neck " . I told her to go take her

shower anyway. She came out a few minutes later crying and screaming,

saying that when she tried to wash her hair (looking up), she fell

against the wall and couldn't do it. She said she couldn't move her

neck and that every time she did, it felt like a shock going up and

down her spine. She was keeping her head/neck cocked a little to the

right. This persisted, so I brought her into ER. In the car, every

bump made her scream. Just sitting down was hurting her. When we got

here, they pretty much brought her straight back to a room. The doctor

came in and said she'd get an IV for pain meds, a neck collar for

stability, and that we'd start with plain neck x-rays and go from

there for possible other imaging. Then he came back in and said she'll

be getting oral meds instead, no neck collar, and that he talked to

the pedi doctors and that they're " sure this is unrelated to her

Chiari " and that she probably has a bad strain. Um, how did she all of

a sudden get a severe neck strain doing nothing? So now we've been

waiting in the room for an hour, and the nurse brought in pediatric

Motrin! And a neck x-ray isn't going to show anything, once they get

around to it. So frustrating.

Thanks,

Beth in CA

--

" I will persist until I succeed, I will never consider defeat. If the

disease of despair should afflict my mind, I will work on in despair.

I will ignore the obstacles at my feet and keep mine eyes on the goal,

for I know that where dry desert ends, green grass grows. " Og Mandino

Beth Fitzpatrick