Posted By Posting
Jan 27, 2009
jean9
g-tube for otherwise healthy food refuser?
Hello again, It's been a while, but thanks to those who replied before! And we're still in decision mode...

my daughter with GERD and dilated LES is blessed to be otherwise healthy. No aspiration,pneumonias, asthmas,allergies, dev. delays, etc.

just GERD and FTT--18 lbs. at 20 months old. she's interested in eating some foods, but never much of anything.

Our GI's say we should go to g-tube. Anyone have a "normally" developing child and opt for g-tube? with success? Complications? Wishing you hadn't done it?

We met with a surgeon who insists we should do fundo with g-tube, and that without it , the tube feeding will just make the reflux worse. UGH!!

We don't want to do either but of course are afraid we'll be putting her brain dev. at risk if we "wait it out." We're just afraid that either option will make things worse.

Just thought I'd see if anyone new out there is reading this. We weigh in at GI clinic on thursday (29th), so the pressure will be on once again to 'decide."

Thanks to all!!!

Jan 27, 2009
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Not sure where you are located or if you have the option, but I am more than a little thankful that we took our daughter to John Hopkins in Maryland. We see a GI there.

My daughter is also 18 pounds at 20 months. However as they pointed out to us there, she is growing at her own pace. She is growing more slowly than most docs. like, but for the pace that is right for her as an individual.

My daughter has eosinophilic disease. It is mostly in her Lower GI track and the fundo which was suggested to us as well could have caused her a great deal more harm than good.

Also, our local pedi. at the time had told us he could force us to put a G-tube if we didn't agree. We felt there was more to it and that if her pain were resolved, she would eat and therefore grow. Then, he said fine she will die and u will go to jail. That was in Sept.

She is now 20 months old. She has grown a few inches and gained a few pounds on Ultracare for Kids cherry/banana flavor. Meggy is a beautiful, strong, delightful, bright child. She is ahead developmentally in everything except gross motor skills.

She is hypotonic, but due to Central nervous system problems. The fundo certainly would not have helped hypotonia.

What we found was that infant formula was certainly hurting our daughter, as was many many foods. We are still in the midst of figuring it out, but we feel confident that we did the right thing by seeking the opinion of a failure to thrive specialist at John Hopkins and continuing with them from there.

If you have access to her growth charts, I urge you to take a look at how she is growing. Is she growing slowly but surely, or has her growth completely leveled off? Is her weight the only thing that is concerning, or are there other things involved? Have things of such nature of Delayed Gastric Emptying been eliminated? Has she been tested for Eosinophillic disease or other allergies? Does she deal with daily pain.

From my understanding, the Fundo doesn't fix GERD. It may even make it worse. I am not trying to persuade u to avoid surgery completely, just to know your options, know your risk, know that it is isn't an instant fix.

I think at 20 months, it is hard to tell how much of her disinterest in food is normal and how much is health related. If I remember right from my daycare days, it is common for kids this age to be what is considered very finicky eaters.

I watch my daughter and it seems food hurts her. She is terrified of eating and yet desires to eat. She will stick a bite up to her mouth and then turn her head and say NO-OWIE.

GERD has been ruled out for Meggy. There was no damage in her esophagus this last endoscopy. The nodules were gone. There were no visible eosinophils in the esophagus. Yet, we still hear this gulping, we still see tummy spasms, and she still has food aversion. What she has-Eosinophilic disease-mimicks GERD in so many ways. A fundo would not have helped in the least.

I would ask the surgeon who is pushing for this-What are the success rates of the surgery? What is the probability it will have to be redone? What benefit and what risk will it give my child? How do the benefits of waiting this out and checking for other things like allergy, and otherwise compare to the benefits of the surgery? Also, ask the surgeon if it is standard that they want to do fundo for every child having G-tube. Is there possibility you will have the same outcome or better without the surgery than u would have with it?

Doctors are not our enemy, and are truly required for our children to maintain health. However, they do not always give us the full story, or all the pieces of the puzzle. They do not always have our best interest at heart.

The decision is yours to make. Just follow your Mommie instincts. I believe deep down, we know what to do as mothers. Sometimes doctors have and agenda, a standard treatment, a way that they are used to working, that does not allow for individuality. Sometimes docs. use scare tactics so that we will do what they want, not necessarily what we know is right.

Ask lots of questions. Know your options. Make the best decision for your child as an individual.

Jan 28, 2009
alex's mom
Alex was dx with silent reflux at 3 weeks old. Previously on Prevacid SoluTabs 15mg daily, now on trial of no medication. Was thought to have oral aversion, saw feeding specialist who says he's just not interested in food--no aversion at all. Slowly coming around to food. 15 months, 19lbs, 7 oz.
Hi! I feel the need to chime in on this one. I agree with everything Meggy's mom has posted. She has some really good suggestions. I actually just wrote a whole long thing that didn't get posted so I will make this one brief.

We were in a similar situation with my son and we sought a second opinion. He is now 15 months and 19.5 lbs, developmentally normal with well controlled silent reflux and no other health issues other than lack of interest in food. Our second opinion GI doc felt we should do nothing. This decision was based on the fact that Alex was growing on his own curve (even if it was <3%). That even though his weight gains were small (ounces never pounds), they were still "gains". I was pressured by our old GI doc about brain growth/development, FTT and was pushed towards the G tube. I felt like my old GI doc wasn't giving Alex a chance. Every monthly weigh-in I got anxiety because I knew the "lecture" was coming. My pediatrician is the one that urged me to get a second opinion because his gut feeling was that my son was "normal" just small. Because the opinions were so different I struggled with what to do and ultimately did a lot of praying and chose NOT to do anything. My son has slowly come around and has only recently made more strides in weight gain. The second opinion GI doc said that some kids only eat enough calories to help them grow (mentally and physically), they eat enough to satiate their hunger but not to make themselves full.

We add Duocal powder (calorie booster which I heard about on this board) to his bottles and any food he will take. We also used a feeding/oral aversion specialist who felt that Alex did not have an oral aversion as he would play with food in his mouth, bite it, etc. He merely just did not have much interest in food. Through the specialist we learned to just give Alex his time to eat and not feel pressured. Currently, he needs some distraction to eat but I'm willing to do that over surgery. Also, we thought about putting Alex in a feeding therapy program (where they put other kids together during snack/lunch time, just so our "lack of appetite" kids can see other kids eating). I also considered asking a daycare if I could just swing by during feeding time so my son could watch and eat with the other "normal eaters". Most daycares were pretty understanding. Also, have you tried Periactin? It's an appetite stimulant.

Obviously, all our children have their own individual and special health issues. I would just get a second opinion before I did anything major. IMHO. GOOD LUCK! I know it is a tough decision. Trust your instincts and give your daughter a chance if you feel like she hasn't been given one by her docs.

Jan 28, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
We were in the same boat with my DD She weighed 21lbs at 24mos old. Our GI at the time wanted to do j tube placement. We opted to push for her to go to a functional feeding clinic and they told us the same as Meggys mom although she wasn't where most docs like to see her she was developing normally otherwise and she was indeed growing just slowly. They said they would rather admit her for closer therapy than to place a G or J tube because that can cause more feeding aversions in the long run. We tried all the high calorie formulas and she refused them so we ended up using bene-cal(a calorie supplement).It was a liquid that we were able to add to the foods and drink that she would take. We were able to avoid G and J tube placement (up to this point) and didn't even have to admit her. We went to feeding clinic 2x aq week and they watched her eat made recomendations and even tried meds to help increas appetite. The team consisted of a pedi a speach pathologist a ot therapist and a dietician. We kept logs of what she ate and recorded 3 good and 3 bad mealtimes a week and they worked with us thru the whole thig also keeping in touch with her other docs. I am not sure where you live but I know of 2 Functional feeding programs in our state here in PA. That might be something you could look into. HTH
Check with your
doctor first!