NCC -

[Guest guest]

Thanks to all for prayers, good thoughts, etc. you might have sent our way.

And thank you dear sweet Haydee for asking for this for .

She seems to be fine now. This has gotten to be really weird with . I

don't want to blame every little thing on Chiari, but my gut feeling tells me

something goes haywire in 's body. Out of the blue with nothing else

wrong with her (nothing meaning no cold or anything like that) she got very

severe chills, her body temperature immediately spiked up and it stayed at

104-105 from yesterday morning till this afternoon. And as quickly as it hit

her, it seems to be gone. What is really wierd is that when the fever hit,

her head seemed to fill up with gooky junk. She had this stuff just pouring

out of her eyes and nose. With the fever gone, so is the junk. This type of

thing has happened a couple of times in the last year or so - which is when

things started to happen with the Chiari. Bloodwork today showed no elevated

blood counts, just a minor elevation in her sed rate. This kind of leaves me

baffled.

The last time this happened was coincidentally the day she had her flow study

(May) and they were concerned she had a reaction to the anesthesia which led

to them thinking she has malignant hyperthermia. Now I wonder if that was it

at all and not one of these weird things going on with her body.

has Chiari 2, which involves the fourth ventricle, which is about

where the hypothalamus is located. So this has got me to thinking there may

be some connection in her body having problems controlling her body temp. and

have something to do with her being cold even in 90-100 weather. Anyone have

any thought on this?? If these situations are truly virus related then so be

it, but this is all to weird for me. Is there anything that a doctor might

check to see if this really could be a real problem?? Or is this one of those

Chiari things that gives no answers and you just live with it?

Boy, do I get to rambling on - sorry.

Thanks again,

Tory ('s mom)

17ys. old, craniofacial abnormalities, midline facial cleft, hydrocephalus,

growth hormone (weighs 56lbs.) and thyroid defecient, blind, choanial

atresia, optic nerve hypoplasia, artificial tear duct, 12-P deletion, sensory

intergration disorder, latex allergy, nystagmus, astigmatisms, probable

malignant hyperthermia, ACM II w/30mm herniation, basilar impression. June10,

98' suboccipital craniectomy and lamenectomy of C1 & C2. Aug. 10, 98' dura

graft. History of 36 surgeries. (and musically talented) SUCH A SPECIAL

LITTLE GIRL!