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Post by nolansmom on Jun 26, 2009 20:14:31 GMT -5
Hello to All! The time has come for us to pursue placing a feeding tube for our son. It has become a struggle to get him to eat in order to take his medication. I am clueless. I goodsearched it and it came back with too much information. Can anyone tell me what I should ask when we go? We go on July 2nd. Thanks!
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Post by Georgia Sharp on Jun 27, 2009 0:07:23 GMT -5
Hello, we have 2 girls w/tubes. I suppose my main concern would be how long is the hospital stay, is the tube placed under general anesthesia or conscious sedation, and will the tube eventually be able to be changed at home. Every GI doc has their own brand of tube they like to use. We have PEG tubes, and I love them, they are low profile Mic-Key tubes. Another major issues is a fundo, which is a major surgery done under general, and keeps kids from vomiting or burping, and aspirating their stomach contents. We don't have fundos due to anesthesia issues, and kids could still aspirate on their own spit. Anesthesia for Batten kids is not so good, it can result in a more rapid loss of skills. We try to keep anesthesia to a minimum. Tube placement only takes about 20 minutes, and we had one done under conscious sedation in office, and one under general in a surgery center. We had 2 different docs, and they had their own way of doing things. Pain management is usually for first 24 hours in hospital, some docs want you to stay 3 days ( I refused w/2nd girl). One girl needed pain meds, the other took nothing except ibuprofin. They show you how to use the tube usually right before you go home, and you can start right away with meds and water. Some docs want you to start feeds slowly as to not have any vomiting problems. Some kids can handel bolus feeds, some need a pump. I had one of each until my oldest started having severe reflux, and is now also on a pump. Reflux can be a problem w/tubes. Good Luck
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Post by Teresa on Jun 28, 2009 15:10:16 GMT -5
We to go July 31st to a GI doctor due to weight lose. I did not know anesthesia resulted in loss of skills more rapid.
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Post by Georgia on Jun 28, 2009 15:26:57 GMT -5
Anesthesia does not always result in more rapid loss, but it can. Something about the anesthesia kills off the already damaged brain cells in one fell swoop vs them degrading slowly in smaller clusters. We personally experienced this when we had several biopsies done to find out what we had. My oldest, about 2 weeks after general anesthesia had a day of seizures, a week of hospitalization, and left not being able to sit up or walk and lost most of her language. We had a terrible time with swallowing, and ended up w/a feeding tube shortly after. The GI doc refused a fundo because of anesthesia issues. I will say that once the tube was placed and we were able to rehydrate Korry, she started eating again, and did so for another 3 years. We just used the tube for water and meds. I did not even think twice about placing a tube for my 2nd child. The tube made life so much easier and gave us much peace of mind, knowing that no matter what, meds, food, and water were all on board without any fighting. I struggled mightily with getting one for Korry, but have no regrets. Georgia
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Post by Teresa on Jun 28, 2009 16:42:23 GMT -5
I want the feeding tube that way I know he is getting what he needs and his pediatricians agrees we just have to wait to see the GI doctor to see if he agrees with us.
Teresa
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Post by Georgia on Jun 28, 2009 20:30:08 GMT -5
You know, that is a good attitude. The reality is that eventually, in the progress of this disease, it will happen. I prefer to think of it as a proactive measure to insure quality of life. I am glad that I did it when they were in stable condition, and not when it became an emergency. I never have to worry, no matter hot it is, whether they are hydrated enough, and meds became so much easier, I always knew they got them Georgia
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Post by Amy Lombardi on Jun 30, 2009 15:38:02 GMT -5
Teresa and Nolansmom-- Nancy Carney has a book about GI issues and it has a large amount of information about feeding tubes. If you're interested in getting the book, just email me at kirka@bdsra.org and I can send you one.
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