Posted By Posting
Sep 14, 2010
jean9
cisapride/propulsid in Canada?
Hi, I live in NY close to the Canadian border and wondered if Cisapride/Propulsid is available there?

how difficult is it to get it/

are we crazy to think of trying it for my dd Libby?(3yrs and only 22.5 lbs!!)Planning gtube surgery soon, but thought we'd try one last med...? THANKS!!

Sep 14, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Have you tried Reglan and failed yet?

I just don't know that I would cross the border with it...KWIM. Not sure of the legality of that endeavor.

At 3 years old and that weight, I'd proceed with the G tube surgery. I do not know a single family who had a tube placed and regretted it. ALL of them wished they did it sooner.

Sep 15, 2010
jean9
yes and thanks!
yes, we tried reglan and failed---twice! I'm not sure of the laws either... is it even available in canada? is it safe, or did the US pull it too quickly? THANKS SO much for your advice re: gtube. We're coming to peace with having to do it. Hopefully if we're at peace with it we can try to explain it to our daughter with peace and optimisim...
Sep 15, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
((((HUGS)))) I know quite a few people on FB who have had to place a G tube in their child when they were olderish.....let me know if you want my email for that or the link....I can connect you to countless other families that have G tube kids of all ages.

Back on topic...LOL I have no idea....our ped did say in the past that she thought it was pulled pretty fast. All meds have side affects and need to be monitored. There are some hospitals that are doing studies and have kids who are taking Cisapride right now. One of those hospitals is Boston Childrens'.

Of course, you have to go there "x" number of times per year, or per few months to get the work over and you have to get approved to enter the drug study as well.

You can contact them and see what they have to say. In the mean time, a G tube is still a good idea.

It's good to hear you are at peace with it now. I know it's a hard decision for some parents. We really had no choice, what with Jedd medical issues.

Again, let me know if you want to connect on FB, we can answer all of your G tube questions. The more comfortable you are with the G tube, the more comfortable your little one will be.

You will be amazed at how little ones can overcome stuff like this, they are such BIG troopers.

Sep 15, 2010
jean9
you rock jedds mommy!
really---you rock! It's like you're sitting there waiting for our ?s and answer so promptly! THANK YOU TONS!!!!!!!

If you think fb would be a better avenue of communication i'll do that... I'm on it, but not really often, but i obviously could be more...

it seems different to do the gtube with our dd SO aware of everything at this old of an age... other p's advice would be great!

Sep 15, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I stay at home now and Jedd goes to pre school. I've picked up a new position at work that requires me to work late long hours sometimes. I will be scares for the next 4-5 days though.

I sub at my son's school all day Thurs. and Fri. I work my normal night job tomorrow night, Friday night. Then I "captain" several functions ( I work in a ballroom doing weddings and such) all day Saturday, think I will work from 7a.m. until around 1a.m. the next morning then I will have to turn around and work Sunday morning at 7a.m. until around 2:00p.m.

I will be one tired puppy but the paycheck will be worth it. KIWM

FB is good for connecting to other parents. They put each other up in the status in order to gain you more people who's child has the same condition as your's does. I know about 50 or so EE parents. One of them went to a national convention, met alot of other EE Mom's and Dad's and they had a FB explsion!!! Great way to connect to others.

My email is onion95@gmail.com That way you can find me. Jedd's photo is my avatar, he's on the beach with his name in the sand in front of him.

One of my passions is not allowing other Moms and Dads to feel alone in their path. In the future, I would like to work with our Peds hospital so that I can develop a tube feeding/GERD support group locally. I just need to get back to work full time during the DAY first. Nights is killing me as I have to get up at 6:30a.m. in order to get meds and breakfast into Jedd......but it is OK, I will live....LOL I take a nap most afternoons.

Sep 20, 2010
jean9
jeddsmomy
can you please tell me exactly how to connect with tube feeding p's on facebook? I ;searched' with your email, but don'ty undertand the lingo well! you said, "status"--do i put certain wording under mine?
Sep 20, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Use my email to find me on FB and send me a friend request. I will aide from there as I can put your like to your FB account up in my status and have people friend request you who have kids with feeding tubes.

I can also put up a generic status saying I have a new tube mommy who needs some friends for advice and have them contact me via FB messasge and pass THIER link on to you for you to decide if you want to add them.

Most if not all of my tube feeding mommy friends, I've know them for about 3 years, so I know them via online but for a long time. I trust them WELL or I would not suggest them.

Oct 08, 2010
beth anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
Migrating to Facebook??
We have noticed that some of our members have moved their conversations to Facebook and e-mail.

There is one big problem with that - - those conversations will be lost forever. When conversations take place on this discussion board, they can still be helpful 10 years from now when some poor parent logs on and starts searching for key words. And a parent using a search engine can end up on a specific page of our discussion board because the conversations are search engine-friendly.

The parents who are actually typing are not the only ones who read the conversations here. For every person who actually posts, there are probably a dozen or more who just read. Maybe they are too shy or maybe they just don't want to feel alone. But they still get a lot of vicarious benefit.

We highly encourage you to keep using this discussion board and not take your conversations away. Tell us if there is something we can do to make it easier for you to share on this forum. What does the Facebook conversation have that is missing here? Do we need a separate discussion section for tube feeding?

Any insight would be appreciated. Thanks!!!
Check with your
doctor first!