Question: Does anyone have a problem with mucus pooling in the throat. C is experiencing really thick mucus and even though he is on glycopyrronium injections to dry up secretions, it doesn’t seem to be working. This is causing him to choke really badly. He is on a modified diet and thickened fluids but is choking now just on the mucus.

Responses from the community:

* MB

We have a suction machine for this issue. we use saline breathing treatments to help thin the mucus so he can expel it easier. he used to be on a med to dry mucus but it only made things thicker and harder for him to get out.


Thank you, I was thinking about a suction machine, I will maybe reduce the injections as the mucus has gotten thicker but he also had covid and I wasn’t sure if this had made the mucus worse

* LD

I did the same for my son. The problem with drying it up causes it to get thicker then mucous plugs. Bj coded several times from plugging. The suction machine is an absolute necessity.


M has a suction machine and a cough assist machine which helps bring the mucus up. Both work good for him.

• AL
All good advice above. Are the doctors fully aware? It is a balance to strike between drying the secretions and not creating mucus plugs. Suctioning will help. The thickened feeds should be reviewed. Swallowing can be an issue.

• TK
We are in the same situation unfortunately .. We are using a saline machine too…that helped a lot to avoid pneumonia in the last 2 years but throat mucus is still an issue

• TO
C’s swallow has deteriorated over the past few years, certain foods he can no longer manage at all. Drs are aware but think I will request a review again, spoke with his geneticist last week but he was more interested in impact of covid. Didn’t get…

• AC
Have you tried a medication called Buscupan? Is a small patch that goes on behind the ear to help dry up secretions

•TO yea, it didn’t work


oh dear! Scopaderm?

• AB
We are battling the same thing and use the nebulizer and Vest to keep it moving about 4 times a day. With the way the air has been in California with the fires we limit her exposure to outside. The only time she leaves the house is Masses and Dr Appt. At nights I keep her head up in the hospital bed to help but many nights I am up suctioning. I have a baby monitor on in my room. Sometimes poor A sneezes and cough at the same time. It is so so hard on her and watching it. I pray to God to not let her suffer.

• MH
R has had secretion issues for several years. I do not give any medications at this point as I think makes the situation worse. I have given guaifenesin (over the counter) at times to thin secretions and believe it helps more than it hurts. I have not suctioned in over a year and maybe two. This is our method that works for us. It may not work for everyone. We have a rollator (rolling walker with a seat) that she sits in while during her vest treatment. We wrap her arms around the arms of the rollator(wrapped in pool noodles for comfort) and she will lean forward and lean her head on my leg or soft stool. This is basically postural drainage. While she is leaning forward she is on the vest machine as well. We have the setting set fairly high. For her – secretions just roll out. Anytime she is in need of “suctioning” we put her in her rollator on the vest machine and let the secretions drain. R as not had pneumonia in several years. We do have a suction machine but R fights me so bad that it traumatizing to her and me. Very grateful we have found this method that works for us.


This secretions are horrible. Nights especially we do keep her up in a hospital bed and have a humidifier on. Thank you

• MH
She does get treatments quite frequently. R sleeps lying flat in a regular bed. A lot times it takes a couple treatments at night to get her cleared out but she is able to sleep fairly well. She well need another treatment around 4 or 5. She is on continuous oxygen monitor. It is a life saver for her and us. I would never get any sleep in otherwise

Posted in

Send a Comment

If you have anything you can add to this discussion that can help future NPC Families, please submit it here.


"*" indicates required fields

This field is for validation purposes and should be left unchanged.