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Mandyintn123

Member
Joined
Mar 26, 2015
Messages
16
Reason
CALS
Diagnosis
02/2015
Country
US
State
TN
City
CLeveland
a little back story my mom is 58 yrs old .. diagnosed bulbar March 4th. she has gone from 155 lbs in October to barely 108 . We are a part of a brand new ALS clinic here in chattanooga which i am not sure we are getting the best information or care since they are so new there are alot of kinks to work out .. she is scheduled for a peg on april 6th. however they do not have a nutritionist on staff nor can they find one apparently. said they will send us home and have home health come out and teach us all about the peg.. honestly i am terrified of that ..which the experience with home health with my grandmother they are less than diligent.. any advice i am grateful for
 
I think the peg is pretty easy to learn and any licensed nurse should be able to show you. There is an adult tube feeding group on FB. You might want to join then if questions arise you would have a quick resource. Not everyone has ALS there but that actually makes it better as some members have had their tubes for a long time and they have no problems typing. I bet there are plenty of youtube videos as well
 
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All a nutritionist will do is calculate how many calories she needs a day. 2000 minimum, 3000 to gain some weight. Put her on Jevity 1.5 and start with very small amounts. A prescription is needed to get it through Medicare or insurance but it is possible that her copay will end up being the same as what you can buy it yourself online.

I worry that with the amount of weight she has lost her body may be in starvation mode and her chemistry all out of whack. Refeeding Syndrome makes adjusting to being fed difficult. She may need bloodwork to determine what needs to be given to sort her out. As for instructions on the feeding tube, see my webpage at Feeding Tubes
 
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