Posted By Posting
May 18, 2010
samsam
gastrostomy tube questions
My 9 1/2 month old daughter was dx with GERD when she stopped eating at 2 1/2 months of age, had an NG tube for about four months and finally had a permanent gastrostomy tube 2/23/10. She now occasionally takes the bottle but doesn't take more than 1-2 oz. if we are lucky. She might take 2-7 small spoons of solids but with much difficulty and coaxing. She goes to speech and swallow therapy every 1-2 weeks. Some of the tips helped but she has not really increased her input by mouth over the past two months. About 90% of what she needs goes into the artificial tube feedings. We were told that the process of her eating fully on her own could take six months or about two years. Not knowing has created indescribably anxiety. She has had only 11 ounce weight gain in almost three months. The doctors, nutritionist and therapists all say it is okay to not gain weight for a while and recommended we decrease her feedings. This is supposed to create hunger cues that she doesn't have because of prolonged artificial feedings.Ugggh! Is anyone familiar with this i.e. allowing minimal to no weight gain to teach a baby to get off tube feedings? We did get a second opinion from another feeding disorder who said this is often done but I can't stop worrying about it.
May 18, 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
There is light at the end of the tunnel I promise. Jedd went from 100% tube fed to 100% oral in two years. It is and still is the hardest "thing" I have ever done and we did it at home with FANTASTIC an early intervention therapist.

If she gained 11 ounces, IMHO, I would not increase her feeds. That would cause a negative affect on oral eating. 11 oz in all reality is not bad at all. Really it isn't.

OK, you said she will take 1-2 oz at one time. Can you get her to take 2 oz and then feed her every 2 hours through out the day?? then you could skip day tube feeds and only do night feeds.

What are you using to feed her with, bottle, syringe, cup, sippy?? What types of therapy are you doing.....are you doing behavioral stuff....I mean, with Jedd, if we could get him to take water orally, we pushed him to take his formula. We didn't care that he only wanted water......we wanted/needed him to drink his formula. I mean, normal kids would eat candy all day long if you let them, but it's not healthy, so you don't let them. When they pitch a fit, you don't cave because as an adult you know better. See what I mean.

Over time we were able to get him to take 3oz at a time and went to 3 hour feeds, then went to 4 oz at a time and went to 4 hour feeds during the day. Let me tell you, 2 hour feeds just about killed me, and we did them for months. I never got to leave the house. But, we had to do it to stretch his tummy. It's a muscle and has to get used to stretching.

We worked closely with a local feeding/rehabilitation clinic and with a the feeding clinic in Richmond. We were under their care during this time. We were not permitted to stop night feeds until Jedd was taking about 110% of his daily needs orally. Even then we had to fit free water into his schedule to replace the fluids he used to get overnight. It was hard, but we hashed out a workable schedule and made it all fit.

To this day, Jedd doesn't eat because he is hungry. He will occasionally ask for food and say he is hungry and we feed him right away. For the most part we feed him on a schedule and it works well for us. He's always been like that.

What are her %tiles like right now? You need to make sure she is high enough to cut tube feeds. Jedd was hovering at the 50% for height and weight. So he had cushion in case he lost weight, which he did initially when we cut over night feeds.

What state are you located in?? I can help with what clinic to go to depending on where you are. Just FYI....all the REALLY good clinics are on the East coast......There are very FEW on the West coast and if you are in the middle of the country, you will more than likely have to travel to get seen.

Also, do you keep a food log to track her oral intake?? That's a good idea to start doing right away. Track the date, length of meal from start to finish, what was eaten (volume too) and any behaviors you see during that meal or snack. This is the most valuable piece of information to have handy when tube weaning.

Feel free to add me on FB...I have an extensive network of tube feeders on there who would be willing to add you as well and answer more questions, I can also answer questions here too. My email is onion95@gmail.com

May 18, 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 should add that within a year of in home therapy and we had cut day feeds. By the 18 month mark we had cut night feeds as well. So, just short of a year. We waited a LONG time to yank his tube though. He had surgeries to go through so we were worried that he would quite eating orally after them and then need the tube again. But, he did not. But it was nice to have that saftly net.
Jun 02, 2010
samsam
jeddsmommy I need help
Sorry my email to you was so long. I haven't heard from you and since I am not computer savvy, I wonder if I emailed you correctly. My daughter is in the 10th percentile. One nutritionist recommends we take away one of five feeds to create hunger to make Clara hopefully eat and drink more. A speech and swallow therapist at another site said it wouldn't be unsafe but she thinks it is highly unlikely that will help. She thinks we should wait a month for more weight gain and then take two feeds away, acknowledging there might be some weight loss. It is so hard to grin and bear this. Noone mentioned your son's system ie overnight feeds until he takes 110% by mouth. I know every case is different though. I don't know what the abbreviations IMHO and FB mean. Please clarify. I hope to hear from others with a similar problem to contact me on how to wean off a gastrostomy tube.
Jun 25, 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
Tube weaning booklet?
One day we need to gather all of the various ideas about how to wean and put them in one place. Thanks for contributing so many details. I'm wondering how you determine which method will work for which kid. Or do you just use the favorite method of the therapist you see? Anybody know a therapist who has more than one method and criteria for which child they think does best with which method?
Check with your
doctor first!