Gagging

[LSARIOL]

Hello!

I have read so much and learned so much that I have not had to post many questions. I do however have one today...

My sister's ALS is very aggressive/progressive. She has been hit very hard very quickly. She started with symptoms April 2016 and was diagnosed in Nov 2016. Since last April she can no longer walking, has very limited use of only her right hand only. She is losing her voice quite rapidly and has started to have issues swallowing. She is still eating (very decreased appetite) and drinking but if something goes down wrong, she starts coughing and her gag reflex is very sensitive now (her words) and then whatever she ate or drank comes back up. I have read a lot about feeding tubes here. Now the question....How do you determine when a feeding tube is necessary? I have suggested we start logging the "gags" to see just how frequent they are to help evaluate the need for intervention/feeding tubes.

Any responses are greatly appreciated! Thank you in advance!

 

[Firefighter58]

Hi there LSARIOL, I have been down that road my self and I would suggest you and your sister see her ALS advisor/doctor and see what he/she suggests .My suggestion is the sooner the better.
Al

 

[LSARIOL]

Thank you Al!

 

[pittsburghgal]

LSARIOL, there is an exam performed in the radiology department called a modified barium swallow that is very helpful to evaluate the swallowing abilities. Liquids, thickened liquids and solids are ingested while the radiologist can image the throat and identify whether there is aspiration or risk of aspiration. I think this would be helpful for your sister and can be ordered by her doctor.

Sharon

 

[LSARIOL]

Thank you Sharon. I will call on this today.

 

[lgelb]

It sounds like the passageway that liquids/solids normally go through one way is now impaired, in terms of a window that opens when it shouldn't or is in spasm. I wouldn't put someone through a swallowing study when the need for a tube is clear, but to get confirmation, an experienced pulmonologist can look at that passageway in the office and verify that it is not working correctly. She runs the risk of aspiration as things stand.

Best,
Laurie

 

[soonerwife]

I would say asap before she is losing weight. It makes things so much easier. I PALS was still eating by mouth when he got his. It was taking him 2 hrs to eat a piece of pizza. After he had the tube placed, I suggested eating for pleasure so it wouldn't be such a chore. It's also so nice to be able to send all his meds down the tube as well as lots of water for hydration.

My PALS also has increased gag reflex. Not sure what that is about but I don't think it is unusual?!

 

[KimT]

I think the gag reflex can go either way. When vocal chords are paralyzed, you can lose your gag reflex

I have to go back to Mayo for a return with the ENT. She puts the scope through my nose and sees my vocal chords. Then she sends me for a swallow test. Finally I see a speech pathologist. When I first presented with symptoms (nearly a year before I was diagnosed) she did this test and discovered my right vocal chord had partial paralysis. She also discovered that I had severe acid reflux even though I was taking medicine.

If I were having trouble swallowing and gagging, I would push for the tube now.

 

[LSARIOL]

Thank you Kim. I don't think my sister is willing at this point to consider the feeding tube. I gently introduce things that I think might help so that she has time to get used to the idea. That has worked in the past so I will try it again....

 

[LSARIOL]

My sister is still eating although less. We are concerned for her to start loosing weight as everything I have read says that it can progress the ALS further. The unique thing is that my sister is overweight. I know that is not common with ALS and again, while some weight loss would help with certain things the huge concern is further progression since she is really progressing quicker than we can keep up with. I am going to suggest the feeding tube gently!

 

[LSARIOL]

Thank you Laurie. I will be suggesting the tube and see how receptive she is!