My Daughter's Mystery Illness - HELP!

[Rare Iron]

Well everybody, thanks for all the well-wishes very much - it means a LOT! Sorry for starting this thread & then kind of abandoning it.

My daughter is doing MUCH better. We've been through a strange roller coaster of events however. We started out at our local hospital which is part of the DMC (Detroit Medical Center) & where both of our daughters were born - we never had anything but praise for the place. Until this. The group of Neurologists basically ran out of answers & threw in the towel on her. That's when we said enough of this crap, & took her to U-M Medical Center in Ann Arbor. As outlined in my original post, we admitted her to U-M Pediatric Center & she was released later that night after one of their Neurologists checked her out. He said our next step was to see one of the Neuro-Ophthalmologists. The reason to see one of these specialists is because they can look into the eyes & see if there is evidence of a pseudo tumor celebri going on. Well, after 2 exams with the 2 N-O's there, they have concluded they do not think there is a pseudo tumor condition, because there is nothing to support the diagnosis. A pseudo tumor will cause the optical discs to be tilted & the nerves to be inflamed. Everything fine on these two accounts.

Anyway, she still has some headaches, but sometimes they are totally gone. She successfully completed a day at school on Friday. She had gone in about 10 days earlier, but during 3rd hour the headache came back full-force - enough to put her into tears. She has gained back the weight she lost (about 11 pounds), & seems almost back to normal. I think the doctors are baffled. They now think the high pressure that was experienced during her spinal tap was a false positive - it can happen if the patient moves or is in the wrong position during the procedure. If there was still a high pressure in her spinal/cranial fluid, it would show in the eye exams. She also still has the rash or red spots! She went to our dermatologist on Thursday & he said it was a reaction to the Diamox from several weeks ago - still hanging on! She also has a "water rushing" sound in one of her ears - this has not been explained by anybody so far. Our next step is to take her to a pediatric neurologist at U-M for further evaluation - we are waiting for an appointment.

In conclusion, she IS much better - & we don't know what it was, but there are the few lingering issues. We hope to see her get totally better soon & have no lasting effects. It still bugs me though - WHAT WAS THIS?