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Feeding Tube/Kidney Stones

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My daughter Madison started the ketogenic diet in October and two months

later she was having surgery to remove kidney stones. Her last CT scan

showed she still had stones. Her nephrologists said that it was probably

the diet and he started her on some preventive type meds. She is still in a

lot of pain. The doctor also wants her to get 50 ounces of liquids!! We

are EXTREMELY lucky if we get 20 ounces in her. Today she has only wanted

to take about 4 ounces! It is almost 2pm. Only 46 more to go!!! So I am

finally ready to say it is time we look at tube feeding. She has had great

results from diet. She has already been weaned off of depakote and is only

on Zonegran for seizures. I would really love to hear from families who

have made this transition. I don't even know where to start. I will look

in archives. How do I know which ones to get? She will still be fed by

mouth. I am guessing that it will be to supplement fluids as of now. On

days when she does not feel well it will help with feeding. Can you please

email me and share your experiences with tube feeding. I want to know all

the ups and downs! Thank you!

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,

Have you tried making popsicles? We had a rough time with fluids also, but

our daughter liked getting a popsicle with every meal and snack. Each one

of our popsicles has 3-4 ounces in it.

Here is what we did; we used washed out sleeves from Freezee Pops that we

bought unfrozen by the case of 400 from Wal-Mart. We then rinsed them out

well to and then filled them with diet pop. I guess you could also use

water and Bickford flavorings if Madison is sensitive sweeteners.

Dan, father to , age 5

Feeding Tube/Kidney Stones

My daughter Madison started the ketogenic diet in October and two months

later she was having surgery to remove kidney stones. Her last CT scan

showed she still had stones. Her nephrologists said that it was probably

the diet and he started her on some preventive type meds. She is still in a

lot of pain. The doctor also wants her to get 50 ounces of liquids!! We

are EXTREMELY lucky if we get 20 ounces in her. Today she has only wanted

to take about 4 ounces! It is almost 2pm. Only 46 more to go!!! So I am

finally ready to say it is time we look at tube feeding. She has had great

results from diet. She has already been weaned off of depakote and is only

on Zonegran for seizures. I would really love to hear from families who

have made this transition. I don't even know where to start. I will look

in archives. How do I know which ones to get? She will still be fed by

mouth. I am guessing that it will be to supplement fluids as of now. On

days when she does not feel well it will help with feeding. Can you please

email me and share your experiences with tube feeding. I want to know all

the ups and downs! Thank you!

Link to comment
Share on other sites

,

Have you tried making popsicles? We had a rough time with fluids also, but

our daughter liked getting a popsicle with every meal and snack. Each one

of our popsicles has 3-4 ounces in it.

Here is what we did; we used washed out sleeves from Freezee Pops that we

bought unfrozen by the case of 400 from Wal-Mart. We then rinsed them out

well to and then filled them with diet pop. I guess you could also use

water and Bickford flavorings if Madison is sensitive sweeteners.

Dan, father to , age 5

Feeding Tube/Kidney Stones

My daughter Madison started the ketogenic diet in October and two months

later she was having surgery to remove kidney stones. Her last CT scan

showed she still had stones. Her nephrologists said that it was probably

the diet and he started her on some preventive type meds. She is still in a

lot of pain. The doctor also wants her to get 50 ounces of liquids!! We

are EXTREMELY lucky if we get 20 ounces in her. Today she has only wanted

to take about 4 ounces! It is almost 2pm. Only 46 more to go!!! So I am

finally ready to say it is time we look at tube feeding. She has had great

results from diet. She has already been weaned off of depakote and is only

on Zonegran for seizures. I would really love to hear from families who

have made this transition. I don't even know where to start. I will look

in archives. How do I know which ones to get? She will still be fed by

mouth. I am guessing that it will be to supplement fluids as of now. On

days when she does not feel well it will help with feeding. Can you please

email me and share your experiences with tube feeding. I want to know all

the ups and downs! Thank you!

Link to comment
Share on other sites

,

Have you tried making popsicles? We had a rough time with fluids also, but

our daughter liked getting a popsicle with every meal and snack. Each one

of our popsicles has 3-4 ounces in it.

Here is what we did; we used washed out sleeves from Freezee Pops that we

bought unfrozen by the case of 400 from Wal-Mart. We then rinsed them out

well to and then filled them with diet pop. I guess you could also use

water and Bickford flavorings if Madison is sensitive sweeteners.

Dan, father to , age 5

Feeding Tube/Kidney Stones

My daughter Madison started the ketogenic diet in October and two months

later she was having surgery to remove kidney stones. Her last CT scan

showed she still had stones. Her nephrologists said that it was probably

the diet and he started her on some preventive type meds. She is still in a

lot of pain. The doctor also wants her to get 50 ounces of liquids!! We

are EXTREMELY lucky if we get 20 ounces in her. Today she has only wanted

to take about 4 ounces! It is almost 2pm. Only 46 more to go!!! So I am

finally ready to say it is time we look at tube feeding. She has had great

results from diet. She has already been weaned off of depakote and is only

on Zonegran for seizures. I would really love to hear from families who

have made this transition. I don't even know where to start. I will look

in archives. How do I know which ones to get? She will still be fed by

mouth. I am guessing that it will be to supplement fluids as of now. On

days when she does not feel well it will help with feeding. Can you please

email me and share your experiences with tube feeding. I want to know all

the ups and downs! Thank you!

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