Post by aracelibriesmom on Aug 10, 2009 12:33:20 GMT -5
Hi everyone! Hope everyone is having a good day.
Wanted to make a post about feeding tubes, does anyone have a baby/child with a feeding tube? If so why do they have a feeding tube? What is the cause, and are they partly dependant or fully dependant on a feeding tube? Does your child take anything by mouth?
The reason I ask is because my daughter, Brianna (23 months)
with comlete
ACC has had a feeding tube since she was 6 months of age (she was diagnosed with ACC at 5mo). She was diagnosed with dysphasia (787.2) aspiration and feeding problems (783.3) they told me that thickening formula was not an option as she would still aspirate it into her lungs putting her at risk for pneumonias and other respiratiory infections and issues. They would allow her at this time to take pureed baby food since it was thicker and she seemed to do well on the swallow studies that they performed.
She has a normal 14f g-tube about 6-8 out of her stomach, she eventually became 100% g-tube dependant and she is now not allowed to have anything by mouth not even pureed foods, after a second swallow study was performed I believe in February.
I have a few questions... she will be two next month and she is very small she is 19.7lbs and I think it is due to her not being able to take food by mouth and is now only being fed pediasure via g-tube. I have heard of blenderized foods ready to feed via g-tube at what age can I give her this? Do any of you have anything you add to their milk/pediasure/ensure/nutren jr? That gives more nutrients as well as fat? Any home blenderized foods that wouldnt clog the tube? I just need some weight on her little legs she is starting to cruise furniture and I think having more meat on her lil legs would help.
Also regarding diagnoses. Does anyone else have the aspiration of liquids issue? Have you been given hope that your child will be able to not asipirate fluids and be able to eat by mouth? Does anyone have a child with aspiration dysphasia that had a g-tube and is now able to eat by mouth?
Her gastroenterologist recommended Vital Stim therapy (electro shocks to the throat) he recommended we wait until she is three or older due to her constant respiratory problems and pneumonias... because they do HAVE to feed them during the process of vital stim therapy. Has anyone heard of or used this therapy? Did it work? How much did it improve if any? I have looked up a lot of good things on the net about it. Her GI doctor thinks it will do good things for Brianna... He thinks that after 3 months of this therapy she should be able to take both pureed and liquids by mouth because her aspiration is not severe its microscopic and not with every swallow. The only problem I have is that this therapy is considered "Experimental" and not a medical necessity so her insurance/mecial will NOT conver it we have fought it and fought it with Dr letters and recommendations and denial after denial... this therapy is very expensive and I cannot afford it... anyone ever gotten this or a similiar "experimental" therapy covered by insurance?
Also if anyone wants to bring up any subjects or has other questions about g-tubes please post, having dealt with the feeding tube for now over 16 months I have learned some stuff
you know how to treat an infected site a oosing site a red site. stories about our kids deciding to pull out their tubes? 
Any input or advice anyone can give me will be extreamly appreciated!
I look forward to seeing responses. Have a blessed day.
From Araceli
Mommy to Brianna who has c-ACC and tons of other issues
California
Wanted to make a post about feeding tubes, does anyone have a baby/child with a feeding tube? If so why do they have a feeding tube? What is the cause, and are they partly dependant or fully dependant on a feeding tube? Does your child take anything by mouth?
The reason I ask is because my daughter, Brianna (23 months)
with comlete
ACC has had a feeding tube since she was 6 months of age (she was diagnosed with ACC at 5mo). She was diagnosed with dysphasia (787.2) aspiration and feeding problems (783.3) they told me that thickening formula was not an option as she would still aspirate it into her lungs putting her at risk for pneumonias and other respiratiory infections and issues. They would allow her at this time to take pureed baby food since it was thicker and she seemed to do well on the swallow studies that they performed.
She has a normal 14f g-tube about 6-8 out of her stomach, she eventually became 100% g-tube dependant and she is now not allowed to have anything by mouth not even pureed foods, after a second swallow study was performed I believe in February.
I have a few questions... she will be two next month and she is very small she is 19.7lbs and I think it is due to her not being able to take food by mouth and is now only being fed pediasure via g-tube. I have heard of blenderized foods ready to feed via g-tube at what age can I give her this? Do any of you have anything you add to their milk/pediasure/ensure/nutren jr? That gives more nutrients as well as fat? Any home blenderized foods that wouldnt clog the tube? I just need some weight on her little legs she is starting to cruise furniture and I think having more meat on her lil legs would help.
Also regarding diagnoses. Does anyone else have the aspiration of liquids issue? Have you been given hope that your child will be able to not asipirate fluids and be able to eat by mouth? Does anyone have a child with aspiration dysphasia that had a g-tube and is now able to eat by mouth?
Her gastroenterologist recommended Vital Stim therapy (electro shocks to the throat) he recommended we wait until she is three or older due to her constant respiratory problems and pneumonias... because they do HAVE to feed them during the process of vital stim therapy. Has anyone heard of or used this therapy? Did it work? How much did it improve if any? I have looked up a lot of good things on the net about it. Her GI doctor thinks it will do good things for Brianna... He thinks that after 3 months of this therapy she should be able to take both pureed and liquids by mouth because her aspiration is not severe its microscopic and not with every swallow. The only problem I have is that this therapy is considered "Experimental" and not a medical necessity so her insurance/mecial will NOT conver it we have fought it and fought it with Dr letters and recommendations and denial after denial... this therapy is very expensive and I cannot afford it... anyone ever gotten this or a similiar "experimental" therapy covered by insurance?
Also if anyone wants to bring up any subjects or has other questions about g-tubes please post, having dealt with the feeding tube for now over 16 months I have learned some stuff
you know how to treat an infected site a oosing site a red site. stories about our kids deciding to pull out their tubes? 
Any input or advice anyone can give me will be extreamly appreciated!
I look forward to seeing responses. Have a blessed day.
From Araceli
Mommy to Brianna who has c-ACC and tons of other issues
California
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