a question on funny seizures

[Guest guest]

I do not post very often, as my daughter Gaby is G tube fed on the diet, and

has been med free for almost 3 years. She has a degenerative mito disorder,

so we are always cautiously expecting things in her condition to change, but

so far things have been 'cool.'

Gaby normally has just 'tastes' by mouth, as she is terribly hypersensitive

and just gags and drools==when anything is in her mouth. However recently

she has been happily tolerating 1-2 teaspoons of diet jelly (Jell-O for you

USA folk!)without gagging or salivating.

Yesterday she was making some odd 'aarrgghh' noises as if grunting. Very odd

for her. She was also putting her arms outstretched above her head

intermittently. This, I associated with seizure activity when she was little

(absent partials), but of course the Drs didn't. They felt the arm thing was

a self stimulating activity..but it stopped when she was given

anticonvulsants.

Gaby is not showing any obvious signs of seizure. (she has never had grand

mals, and only ever a few myoclonics..mainly absences continuously..with

awful looking EEGs)

What do you all think..I am reluctant to withdraw the jelly just yet as it

is the only thing she will take orally.She rejects anything creamy still,

and lumpy foods just have no chance at all.

Any input would be gratefully appreciated.

ne (in Australia). Mum to Gaby 6 years, mito disorder, ketogenic diet,

G Tube, microcephaly, global delays, and the prettiest smile.

www.gabylavender.webhop.net