Hello,
I am so happy to have found this site. I've been all over the internet and haven't found it before!
I have an 11 month old daughter who has a GJ tube. She's had that since Dec. 03. Prior to that she had an NG tube from the time she was about a month old. (She also had a heart defect and had open heart surgery at 1 month) We were led to believe all her weight/feeding issues would disappear after heart surgery but they didn't.
She sounds like some of your kids, constantly fighting the scale-she's FINALLY gaining (18 lbs!) but she's fed solely through the J right now.
I am so frustrated w/ her GI and feeding team. They seem so content to just let her gag and vomit all day long w/out trying to aggressively treat this! (She takes Prilosec, Reglan, and Zantac currently)
Thanks for creating this site. It's so nice to have somewhere to go with this now!
ps-is the book available everywhere?

Hi Megan and a special welcome to a fellow J-tuber! :)

I'm glad you found us! Sorry that your daughter has been having such difficulties :( ! Your frustration with the medical team is exactly what I felt when Shae was that age...I swear I wanted to strangle them. Now, I realize it wasn't so much their attitudes as I percieved it at the time but more that they just didn't know what else to do. I think it's difficult for doctors to admit when they are at a loss for answers. Once all the medications have failed the next step is surgery and many doctors simply know how many problems the fundo can cause and avoid doing it at all costs. Have they told you at all that G-tube's can increase the amount of reflux episodes, actually making reflux worse? They can even cause reflux in cases were it wasn't present in the first place. Perhaps you could consider the possibility of a straight J-tube? Or even an increase in meds if she has gained weight...maybe try prevacid instead of prilosec? Just throwing some suggestions out there.

Yes, as far as I know, you can order the book directly from the website (http://www.infant-reflux.com) and they will ship it anywhere...or you could ask a local bookstore to order it if they don't already stock it...might be cheaper to order online though...not sure. Be sure to let me know if you get it, I can't wait to start getting some feedback on it.

I'm glad you joined and look forward to getting to know you better. :P

Welcome Megan!

Although Evan's reflux isn't as bad as that of Maeve, I share your frustration with the doctors. They can see our children retching and vomiting and still not seem to do anything about it. My youngest son, Evan, is nearly 23 months old and is finally weighing in at 25 lbs. It has been a real battle, but with the help of a dietitian and her suggestion of adding protein powder and calorie supplements to his daily diet, we are finally seeing a bit of weight gain (between the weight losses, that is). Hang in there! Things do get better.

Hope to see you around here again soon!

Hi Megan ,I know how you feel about finding this web site.It really is comforting to know there are other parents out there who can relate .Welcome and I honestly hope for you and your child, the best of luck.

Hi Meagan
My 3 1/2 year old son has just had the fundplication op and although he still does not eat solid food he has not coughed once since the op ( oct 05).
You can order the book from the amazon website as ive just done it and i live in england. He had acid reflux since he was born all the acid leaking onto his lungs the surgeon said his lungs will become normal again but he cant put a time on it?
Oliver's reflux is no where near as severe as others but i understand your fustration with doctors and other people its like they dont want to do anything for the kids?
Best wishes
Cheryl
Olivers Mum
xx :

HI and welcome, Megan!
I agree w/ what Roni mentioned about the Doc's not always knowing what else to do. My mom is in the medical field and she said that a lot of times (especially when it comes to GERD) the docs just don't know what to do and don't want to admit it, of course!~
Anyhow so glad you found us and I know you'll find greast support here!~

Hi !!
Welcome to the boards! My daughter also had heart surgery at birth so I know how upsetting it can be to go from all the trauma of that to the day to day trauma of reflux. The prevacid has helped her a lot. Also has the Reglan. I hope you find some answers from your docs since you have already found support here!

Hehehe...Megan (Maeve's mom) joined the boards soon after we opened. I haven't seen her in ages (except on another board that I used to frequent), so hopefully she'll get a "reply to her post" notification and drop by again. Thanks for re-opening the thread!

Welcome to the boards! Frustration has and still does run high here, too. Seems to go hand in hand with GERD issues. We do not have the same issues you do and we are indeed making headway with our sons, but it is a slow road.

Hope to see you around and getting to know you.

LOL Janette, I was just noticing the date on that post and i was VERY confused!! Thanks for clearing that up. How on earth did this resurface again?! LOL

Hello and welcome to the boards!

Sorry for the late posting. Christmas shopping! :oops:

Good luck at your appt. Let us know how it goes.

Looking forward to getting to know you! :D

LOL...I think that someone was going through old posts and restarted it.

LOL...I think that someone was going through old posts and restarted it, Sara.