Posted By Posting
Jun 06, 2005
Anonymous
G Tube
We've been dealing with reflux since our daughter was 2 weeks old. She's now 21 months. She was born weighing in the 97th% and has since fallen completely off the charts. Her ped gi is recommending an endoscopy (this is a repeat) and inserting a g-tube at the same time. I'm wondering if anyone has a little one with a g-tube, and if so, what was it that brought it on? How long has your child been on the g-tube? Anything else you can share? Thanks in advance...
Jun 07, 2005
Susie
Two GERDlings with g-tubes
I have two GERDlings with g-tubes. Both daughters' g-tubes were put in this past year when they had (last resort) nissens. They both have Mic-Key buttons. I think they are quite convenient and clean, but I don't know what other types of g-tubes there are out there. One of my daughters is two years old and one is five years old. They both have totally different symptoms and different reasons for nissens, but both have severe reflux. My two year old got her g-tube in 9/04, is no longer using it, and is hopefully having it out 9/05. She is doing beautifully. The nissen was a huge success. We are thrilled with our decision to have it done on her. She is a new child! No more stopping breathing, no more Sandifer's syndrome, no more refusing to eat, no more special diets, no more sleeping uprght, no more screaming all day and night, no more medicines. My five year old had hers in 4/05 and is still being supplemented at night through it and will be for another four to six months as planned for weight gain. We're still not sure if the nissen worked. She never had outward reflux signs, but has severe tracheal/bronchial scarring from the reflux, not to mention other problems like three years of chronic sinus infections with complete antibiotic resistance and more. She has recovered fine from the actual nissen, eats without a functional problem, but has lost her appetite and can't keep weight on. The g-tube insertion was an optional part of the nissen operations. We are so glad now that we chose to have them put in. My two year old had every complication possible with her nissen and was g-tube fed for 10 hours each night for 5 months after the nissen. Her recuperation took 8 months. My five year old's nissen recuperation only took 6 weeks, but she needs to be g-tube fed at night since she can't seem to maintain her weight since the surgery. So, we are so very glad that we chose to have the g-tubes put in. We haven't had any trouble at all with the Mic-Key buttons except with my two year old's coming out twice. She's quite active though. We fed Elecare to my two year old through the g-tube since she was dairy and soy free and we feed Kindercal to my five year old through her g-tube since she drinks milk. There is a pump that you program that will feed your child so it's not as scary as it seems. A visiting nurse comes out once a week to check on the girls. They also deliver all the equipment you will need to your house and they train you on how to use it. They are available 24 hours a day if you have any questions. Hopefully, you will have a similar agency in your area. It's all covered by our insurance policy. Hopefully, yours will be too. I hope this helps. Susie
Jun 07, 2005
Anonymous
G Tube
Thank you so much for your response! My daughter isn't necessarily a candidate for the Nissen, as she doesn't have any real damage from her reflux (other than her refusal to eat). The g-tube is more in response to her FTT. Every time she gets sick (which is a lot), or the wind blows the wrong way, she stops eating entirely. Nothing else has worked so far. She did have an NG tube at 3 months old for the same thing, and it helped tremendously! It seemed that once we were able to get some food in her, she started feeling better. Unfortunately, things were back to "normal" by the time she was 9 months old. And, here we are again. I guess I'm just struggling with my own emotions right now. Anyhow, thanks for all your feedback. It was reassuring to read! Kelly
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