Feeding Tube/Kidney Stones

January 23, 2004

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!

January 23, 2004

,

Our daughter has microcephaly and is severely disabled. We struggled for

many years with failure to thrive, constipation and poor fluid intake. I

was opposed to the G-tube for the obvious reasons; not normal,

segregating, etc.

Finally she had flu with vomiting and diarhea and went downhill when we

couldn't get enough fluids in her. She was coughing a lot, spilling a

lot and radiography showed that she had " pooling " . I believe that means

that when she swallows, there is still a tiny bit of fluid in her throat

that gets inhaled on the next breath.

After the fiasco of actually getting the tube put in properly, she has

done much, much better with the g-tube. She still eats solids by mouth.

That is a great pleasure for her and I think that it makes for better

oral hygiene and overall health.

Good luck,

Bill

Rice wrote:

> 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!

>

January 23, 2004