/Anne

[Guest guest]

,

Kierra has had 2 emptying studies done. On and off meds to see what

the difference is. It is a long test, but not to hard on the

children. They have to eat scrambled eggs that have some radio

active material in it, then pictures about every 20 min for about 3

hours. Kierra is on many meds right now, domperidone is what she is

taking for her motility problems. We have been searching for

answers for about 2 years now. She had a MRI on her brain today. I

am not sure what they are going to see with that. Our Motility

doctor is Dr. DiLorenzo. He works out of Childrens Hospital of

Pittsburgh. In June he is moving to Childrens in Clevland. Kierra

just can't gain weight.

Anne,

Kierra still needs to be on her tube. We had to take it out in Dec.

because when she got her GTGJ tube, her site would not heal. We had

to get her silver nitrate treatments 3 to 4 times a week, and her

stomach acid was so bad it was burning her skin on her stomach. She

eats very little and is very picky about what she eats. She eats no

meat, sugary food, veggies, pizza, pasta. I mean it is terrible to

get her to eat and drink enough. And now she can't drink her

pediasure by mouth without getting sick to her stomach.

and Anne,

How did you find out your children had Mito Disease? We have been

to so many different doctors, so many tests and I feel like we are

going in circles. If you have any advise please let me know. Her

PT leaves are up, she has to have vit.K shots to bring it down. Her

stomach stays bloated and she looks pale all the time. She can't

tolerate the heat. She turns beat red and sweats so bad, she falls

a lot, she likes to sleep, her gi track is a mess. The most she has

ever weighed is 50 and that was on her tube. She has steady about

47 right now. But she is 52 inches tall and she is almost 9. I

will take any advise. Does this sound like your kids. Sorry this

is so long, thanks so much