I just wrote up a fairly poetic blog entry explaining my recent experiences in a diagnostic program with my daughter, but I committed the cardinal sin of bloggerdom - I composed in the uploading tool (as I'm doing now) and I didn't copy my entry. It got sucked into the vortex of Blogger Party, possibly never to be seen again. If you run across an entry titled "Because..." please let me know.

Now you will get the decidely unpoetic version of our experiences, since for me, creativity rarely strikes twice.

If you've been reading along here, you know that I went to a special hospital in Denver, Colorado with my 20-month-old daughter in an attempt to get a handle on her extensive food allergies and reflux. During our 16-day-long stay (10 of which were scheduled as part of a "day program" at either National Jewish Hospital or Children's Hospital of Colorado), my daughter was poked and prodded, and so was I, mentally, as the doctors and other professionals worked hard to get a solid grasp on exactly what we had been experiencing.

I've often referred to my daughter as the World's Most Allergic girl since early allergy testing showed her as positive to nearly every food she consumed. That early testing, plus an even earlier diagnosis of acid reflux based on the vomiting, fussy behavior, food avoidance, and back arching while eating (a common reaction to the pain of acid reflux), caused us to look at all interactions with food in a rather biased way. Every reaction, every symptom, was considered a sign of these diseases, and why wouldn't they be? Well-known doctors had documented that she had these disorders.

Except, it turns out, that she didn't.

A pH probe showed objectively that, at least while on her reflux medicine, she did not actually have reflux. So while she screamed at night as if suffering from that disease, and threw up a lot as if refluxing, she was not.

A skin allergy test done using state-of-the-art techniques showed that, insted of being allergic to 21 foods and all environmental allergens, she really only had a budding allergy to dust mites. Not to milk, or soy, or wheat, or corn, or any of the other foods we were painstakingly avoiding (those foods are in EVERYTHING). In fact, when I described the previous methods of testing we endured, the doctors at National Jewish cringed in disbelief.

Since the professionals at National Jewish and Children's work together (a novel idea!), they discussed my daughter's situation in depth. Not allergy. Not GI. What? They decided to think outside the box, and outside their own specialties... which is how my daughter came to be diagnosed with a Chiari Malformation (CM), a defect of the skull affecting the brain.

Having a CM means that my daughter's cerebellum extends into her spinal column, putting pressure on the brain. The symptoms reflected from that pressure are varied, but include vomiting, choking, gagging, and severe headaches. I don't know if my daughter cries at night because of headaches (though Motrin seems to be helping), but I do know that she has certainly demonstrated those other behaviors.

Next Wednesday we will begin the process of treating the CM by meeting with a pediatric neurosurgeon. The only fix is surgical, a procedure that makes more space for the brain in the spinal column. It's not brain surgery, nor spinal surgery. It's surgery NEAR those areas. Scary enough, but so promising and hopeful. A "normal" life may be within our grasp, after rehab and therapy.

A dream coming true, thanks to the folks at National Jewish (www.njc.org).