Appetite vs. Hunger and PEG

[NeedCourage]

Hello all.

Pals continues to be unable to eat much due to full feeling and no appetite/hunger. (not sure of difference)

Weight is dropping.

We are getting a bipap with cough assist within a few days - hopefully - and this will help to relieve many/some of his symptoms.

Question:

If he cannot eat now because 'stomach' already feels full and bloated - what is difference between putting food directly into stomach.

PS We are scheduled for a SNIFF test and upper GI... 8/21.

 

[dalvin]

Can only answer for myself but before my peg was put in, eating would tire me out tremendously so I really had no appetite. The desire for food was diminished because of the work involved. With the peg my 'meals' are spread out more so I'm not putting as much in at any given time. I use 6 cans of jevity a day with 3 to 4 hours between each can. Hope this helps a little

 

[GregK]

Dalvin, important question: how has your weight done since the peg was put in?

... btw this string would probably be better off under something other than "newly diagnosed" 8^|

 

[dalvin]

My weight has remained steady, no loss or gain

 

[Nikki J]

Sister regained 20 pounds with feeding tube. Her appetite definitely increased. Think she was in starvation mode before plus as Dalvin said eating is so much work

 

[nebrhahe53]

If you can get Nuedexta you might try that. It is not FDA approved for swallowing difficulties yet although there are clinical trials for that. I can tell you firsthand it works for swallowing problems.

 

[cheerleader]

If you can get Nuedexta you might try that. It is not FDA approved for swallowing difficulties yet although there are clinical trials for that. I can tell you firsthand it works for swallowing problems.

I'm curious if this was prescribed for you for the pseudo bulbar form of ALS or if you were in a clinical trial. My husband has bulbar ALS and often has difficulty swallowing his totally liquid diet (thickened liquids), along with the speech, saliva issues. Wondering if we should pursue getting this medication or if it is limited to clinical trials ALS, and those with pseudo bulbar form. This forum is a WEALTH of information! Think of that saying, "All of us are smarter than one of us!" Sharing information enriches everyone! Thanks. Donna

 

[lgelb]

Courage, if he has trouble breathing, appetite/bloating could easily be affected, so don't judge by his present condition. The BiPAP is a great step and once that is tweaked properly, you can consider timing of the PEG.

Cheerleader, there is no "pseudo bulbar form" of ALS. I think you mean pseudobulbar affect, which can be a feature of any symptom in any form of ALS, and is also known as emotional lability. Lack of control over emotions is what it amounts to. You do not have to be in a clinical trial to get a Nuedexta prescription, though reimbursement should be discussed with your plan. If your plan requires a prior auth for it, they will probably want documented PBA.

 

[cheerleader]

Igelb- thanks for the correction! My question is: are any of you taking the nuedextra for the difficulty with saliva, swallowing and speech? Or, is everyone taking it just for the pseudo bulbar affect ? This disease is SO complex, with such variations in symptoms,progression!

 

[Nikki J]

My sister took it for the EL worked great but did not help the swallowing etc but enough PALS reported that they did find an improvement in swallowing and or speech when prescribed it for EL that they decided to do a clinical trial. If that shows it does benefit then it might become and indication and insurance would pay without having to have the EL part. That said, here and now would I want to try if I were starting bulbar? Yes. How do you get it if your insurance is prior auth? There is no test for PBA it is what you report and what is documented in your record. You could also pay for it but it is expensive. Or one of the 2 components the dextromethorphan is over the counter cough syrup. Read labels or ask pharmacist. It probably is not as good as the combo but it does help some people according to anecdotal reports

 

[Schmidhogan]

I feel for your PALS. Same with me. I never feel hungry but if I'm not full I make myself eat. Hunger is a feeling that compels you to want to eat. If you feel full you can't eat. My dr prescribed Mirtzapine, an antidepressant which has as a side effect weight gain. Hasn't worked for me but maybe it would work for your PALS. Good luck. alex

 

[NeedCourage]

Thanks for all your comments and good wishes. I'm grateful.

 

[nebrhahe53]

I do not have EL wish I did. I am taking Nuedexta off label for the swallowing and voice effects. i can't vouch for anyone else, but I can tell you it has made a world of difference to me in swallowing, and this was confirmed at the ALS clinic I went to a week after I started taking it.
A month ago it took me almost 2 hrs to finish breakfast and a swallow test showed silent aspiration of liquids.
I was told to basically drink thickened liquids ans stay away from most solids.
last week the swallow test was almost normal. Only a slight penetration with thin liquids-I was told to eat whatever i wanted. I imagine eventually the disease will get me but for now the neudexta seems to help.
The dextro itself in Delsym cough syrup probably doesnt do much good as most of it is oxidized before it crosses the blood/brain barrier. I am told the quinidine prevents this from happening.
One option is to buy both generics (dextro and quinidine have been around forever) and mix them yourself. Probably not as good as Nuedexta but much cheaper.
Just watch out for the quinidine-in high doses it can do really bad things like cause blindness.
I might also mention there is some indication that Nuedexta actually slows down the course of the disease though this is not confirmed, but then what is with this beast...

 

[MaxEidswick]

>I do not have EL wish I did. I am taking Nuedexta off label for the swallowing and voice effects. i can't vouch for anyone else, but I can tell you it has made a world of difference to me in swallowing, and this was confirmed at the ALS clinic I went to a week after I started taking it.
A month ago it took me almost 2 hrs to finish breakfast and a swallow test showed silent aspiration of liquids.
I was told to basically drink thickened liquids ans stay away from most solids.
last week the swallow test was almost normal. Only a slight penetration with thin liquids-I was told to eat whatever i wanted. I imagine eventually the disease will get me but for now the neudexta seems to help.
The dextro itself in Delsym cough syrup probably doesnt do much good as most of it is oxidized before it crosses the blood/brain barrier. I am told the quinidine prevents this from happening.
One option is to buy both generics (dextro and quinidine have been around forever) and mix them yourself. Probably not as good as Nuedexta but much cheaper.
Just watch out for the quinidine-in high doses it can do really bad things like cause blindness.
I might also mention there is some indication that Nuedexta actually slows down the course of the disease though this is not confirmed, but then what is with this beast...

hoope on the horizon?!?

 

[NeedCourage]

DARN IT !
I goofed - did not make clear that Pals has no swallowing or chewing difficulties. Still has use of all limbs and speech (tho' he doesn't do much with any since he has zero energy). His symptoms are what may? be caused by most muscles in his ribcage/torso being wasted away and the 30# weight loss.
Sorry for any confusion.