Total Parenteral Nutrition

[Mlock]

Can anyone tell me about this? My MD son asked if I wanted this at some point. Seems to be more than a feeding tube. Did a search on this website and could find nothing about it! Just looking ahead. Going to attorney tomorrow to modify my health care directive. Thanks. Wendy

 

[Nikki J]

I have never heard of a PALS having this. In general our digestion works ok especially if you do not delay getting a feeding tube when told it is time if you are going to have one. I am familiar with TPN, just don't think it is on the path most of us travel. What kind of MD is your son? He has a headstart on most people but if he does not work regularly with ALS he has some learning to do as well. Usually our directives address things like feeding tube, non invasive ventilatory support, trach , vent, whether you want resuscitation with cpr now, when you might not want it, when you might want various treatments withheld/ withdrawn. It can be very difficult to know what you do want and be aware you can change your mind. It is at least as important to let your wishes be known to your health care proxy and alternate. I would also say it is very important to let others close to you know. If you pick your son and there are siblings let them know what you want so they understand he is implementing your choices not his own

 

[affected]

I agree with Nikki, never heard of a PALS using this - the peg is most common (or RIG but that's about how they place it) and for some a J tube has been used.

As Nikki says - get the peg EARLY for the best results.

 

[GregK]

This sounds like something you would get if you were in a long term coma:

TPN will drip through a needle or catheter placed in your vein for 10 to 12 hours, once a day or five times a week.

TPN is used for patients who cannot or should not get their nutrition through eating.​

https://www.nlm.nih.gov/medlineplus/druginfo/meds/a601166.html

 

[lgelb]

No, TPN should not be necessary. There are times when a tube won't work, like certain GI tumors/conditions. He may have had patients for whom that was the case.

 

[Mlock]

He is a family practice physician and admits that he has a lot to learn about ALS. And he said he already has learned much at Vanderbilt. I have talked with him about what I probably want and will talk with my two attorney sons after the holiday. Thanks you all for the help.Wendy

 

[gooseberry]

Wendy, each person ,on their journey, becomes an als expert. You will know best how to help you, what makes you comfy, etc. We have encountered many ,doctors,nurses, and associated other knowledgeable people who have no idea about how to treat als. I am so glad you have your son to go with you to appointments and learn. My husbands pcp has only seen 1 person with als, my husband. He has no idea of the issues he faces or how to treat him.

Knowledge is power with this disease so you can be prepared as much as possible. The als association or local mda clinic will have a lot of information online and at clinic. Always feel free to ask your questions here. Chances are, someone can help.

 

[Mlock]

Thanks, Gooseberry. Yes, Frank has only had one ALS patient. But he is willing to learn as we move forward! Today the ALS clinic here gave me my first appointment so things are moving along!

 

[gooseberry]

That is great news Wendy. I hope you get to clinic soon. Usually they have a pipeline to all the services you will need. Bring a notebook with all your questions. Good luck. Clinic day can be exhausting