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"Too underweight" for feeding tube?

LogsOnFire

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Dec 21, 2018
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Friend was DX
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11/2018
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MA
Hi everyone,

Has anyone ever encountered being told that they might be "too underweight" to get a feeding tube? One of my dearest friends was diagnosed several months ago and is now at the point where he needs one (he probably needed one way earlier but for a variety of reasons didn't pursue it) and his team is saying he might be too underweight to have the procedure. Is this a legitimate concern? Could he choose to go through with it anyway, given that the alternative isn't great? Is there any way to get temporary supplemental nutrition (i.e. through an NG tube) to get to a point where he could get a PEG/RIG? Other tips for boosting weight when swallowing is so difficult (he's already drinking boost very high calorie shakes and eating high calorie power bars)? Anything in particular he or his caregivers should be asking his doctors? His breathing capacity is still pretty good, around 90% at last appointment in March. He has bulbar ALS and so far extremities are unaffected. He's seeing a hospital-based, interdisciplinary ALS team.

Thanks for any experience or advice/wisdom you can share.
 

Nikki J

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PALS
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Is your friend at MGH? I see your location and think likely? They are usually pretty proactive and am surprised at this.
Was it the ALS neurologist or someone else that said this?

The issue presumably is that refeeding when one is really really malnourished can be difficult to impossible. My sister delayed far too long and had great difficulty tolerating feedings but we worked through it. There was another PALS I knew at the time who was in a similar situation and could not tolerate feeding. Having the tube and trying just added misery to his last months.

Your friend should be able to discuss this with his team/ doctors. His doctor should explain at length their thinking on this. . People here have done food blends and smoothies but a feeding tube is generally easier
 

LogsOnFire

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Yes, at MGH. But he's not local and goes every few months (he sometimes he uses the telehealth option). I'm not sure which team members are telling him this, but most recently, the NP in the ALS clinic.

To make a long story short, his general approach is not to deal with things until they become urgent, so this isn't a surprising development, but it is an unfortunate one. He now wants to get the tube but unsure if he will be able to. At this point it's taking hours to eat a meal/drink a shake and even then he's struggling to get enough calories. His weight has been fairly stable for 6 months, but prior to that he lost ~20 lbs pre-diagnosis. He's always been slim for his height so ~20 lbs is significant. He's just under 6 feet tall and currently ~127 lbs. If he could get the feeding tube, I imagine it would improve his quality of life quite a bit at least for the time being, given that he would gain back all the time he's currently spending struggling to get enough food in and would be better nourished. I'm hoping to get some insight ahead of his appointment on what questions he/his caregivers should be thinking of asking and what's reasonable to push for, if he wants to.

When you say your sister "worked through it," what does that mean? And when you say you knew another PALS who couldn't tolerate feeding, what does that mean?

Thanks...
 
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Nikki J

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The other PALS had abdominal pain nausea and vomiting when he tried to take in even minimal feedings. He died.

My sister had to start with special formula small amounts very slowly and we gradually increased over weeks. Eventually she ended up with a more normal formula.

There are three MGH NPS one works with the home care program and I don’t know her. The others would not say such a thing lightly and would surely expand on the statement and talk about it as long as he wants. The question I would be asking is are you saying I can’t have a tube? And I definitely would be talking to my neurologist
 

Diane H

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There is a possibility of Refeeding Syndrome in ALS patients who have been severely malnourished and starving slowly. This is more common in anorexics. Refeeding requires careful and frequent monitoring of lab work and medications to correct the totally out of whack body chemistry that severe malnutrition causes. This requires an internal medicine doctor familiar with Refeeding Syndrome.

That said, a weight loss of 20 pounds, even in a normally thin person, wouldn't send them into refeeding problems, especially since he hasn't lost more in the last six months. His breathing is very good and this is an excellent time to get the feeding tube. I am bewildered as to why they would say he was too underweight for a tube. He needs one. Now. End of discussion! Even if he doesn't do well with a formula, he has to be allowed to try the feeding tube!

It may be helpful to start him out with the same things he has been struggling to swallow only through the tube, then gradually adding a formula If he has trouble with a formula, (nausea, diarrhea, cramping, bloating) there are other formulas to try. Some people do better on one of the "natural" formulas (expensive but covered if the doctor verifies that he has tried the usual formulas). And the option of blenderizing familiar home fixed meals with a good blender such as a Vitamix is often tolerated well.

Finally, yes, he could have a temporary standard NG (nasogastric) tube placed through his nose and taped in place. It wouldn't have to be replaced unless it clogged but he would have to keep track of the markings on the tube. If it pulls out a bit, it could allow the feedings to get into his lungs. But he really should have a permanent gastric tube place by PEG or RIG procedure.
 
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codyclan

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My husband waited 'too long' to get a tube and had a great deal of difficulty tolerating feeds. They found that putting him on a kangaroo pump which meant he got a small amount of formula consistently throughout the day helped until we were able to slowly increase his volume. We went to MGH but weren't local and MGH provided advice and guidance regarding the process.
Keep us posted.
Tracy
 

lgelb

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If he wants to keep going, as others have said, you can find a good way to get the tube placed in Interventional Radiology and try a range of feeding options. We have had other PALS here at that kind of BMI.

If he has difficulty chewing or swallowing, blend-in options for improving nutrition (and many of us would recommend real food blends ahead of commercial supplements generally full of simple sugars) include eggs, nut butters, instant potato flakes, cream cheese, whipped cream.

Best,
Laurie
 

affected

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A good PALS friend of mine in Australia had refeeding syndrome after peg placement last year and it was horrendous, and sadly she died.
Some PALS decide not to have the peg and then when things are really at a low point try and change their minds. It's great you are trying to help out, but be sure you find out exactly what the PALS wishes are so you advocate for the PALS.
 
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