Hi everyone!

[Guest guest]

Hi! I'm new on this list and don't have EE or EG, but I do have Crhonic

intestinal pseudo-obstruction and am on TPN and a small amount of J-tube

feedings, also. (I belong to the TPN list, too). I was curious about

this list because Dr. has been my GI doctor for the past three yrs.

I was one of his first patients at St. 's (before he was well

known for treating EE and tilt table abnormalities) and I really like him

a lot. He gets frustrated sometimes 'cause he can't cure my illness, but

has stood by me through my many hospitalizations and hard times. He

always tells me about his new theories and how they're helping kids. Do

any of you live around Phila? I live an hour north of Phila. How many of

you have gone to see Dr.KElly? HAs the neocate helped your children? I

tried neocate, but it didn't help me, but I also don't have EE. Do most

of your kids have G-tubes or NG tubes? I have a G-tube and A J-tube now,

but when I was 15 I had to put an NG tube down every night for 6 months.

I got really good at it and could even do it while I was on the phone.

I know there's a teenager who belongs to this group (Kelsey? I know your

name starts

with a K). How old are you? I got sick when I was 14 and 1/2 and missed

all 4 yrs of high school and was home tutored. I'm in college now and am

21 yrs old, but it's still kind of hard going to school when I'm in pain.

My friends try to understand, but it's tough. I feel like I missed out on

being a teenager, and those years are not replaceable. I have an awesome

support network with other teens and young people with illnesses, though,

that have helped me through so much. If you have the time, there's a cool

website for children and teens with illnesses that you can get into by

typing the words " Bandaids and Blackboards, teens and illness " and then

search. Anyway, are there any other teens with EE that you know of? Do

you live near Phila? Have you been to see Dr.?

Do all of you belong to the OLEY foundation for people on tube feedings

and TPN?

I hope Kody's family is still hanging in with all those feedings. That

must take alot of patience. (Is your name ?)

Take care everyone and I look forward to getting to know you.

-Malisa (21 yrs, CIP, TPN, Jtube feedings)