coughing constantly

[lgelb]

Hi Pat,
For the overall risks associated w/ Sudafed and house brands, I'll refer you here. Note that doesn't mean no one should use it, just that it shouldn't be first line.

As for acidic juices in the tube, it's not so much that they would eat through the tube as, if you use them with meds or formula or food blends, those solids could curdle because of the acidic pH and cause clogs. So I would only use them solo and flush with lots of warm water afterward.

Best,
Laurie

 

[Inventor]

I have been using a peg button for 3.5 years. We put anything into it. My wife even gets rid of christmas leftovers through my peg. Not even once has the button been clogged. The jam always comes to the detachable tube and is trivial to clear. And the tube is changed weekly anyway.

 

[patoyeah]

Thanks, we found formula does curdle and severely clog with some supplements. We r more careful about combinations now.

Clog Zapper is the best thing we found to clear my tube, we tried dozens of things.

I read supplementing with Vitamin C reduces the risk of NAC oxidizing and causing stones.

Rollin Stone,

Pat

 

[lgelb]

Vitamin C clears the body very easily. And the literature is not locked down on that, depending on the stone type. I would be very cautious with NAC in your situation.

 

[patoyeah]

I just read NAC can prevent stones, depending on the type. I will have my wife copy n paste the article here later.

Also read magnesium helps dissolve stones and adding lemon juice to water helps ( tip from Urologist ).

 

[Atsugi]

Great learning here. Special thanks to Laurie and Patoyeah.

 

[lgelb]

Yes, it could depend on the chemical composition of the stone and what else you have on board whether NAC might be helpful, harmful or neither, but no controlled studies that I can see have been done on any type with NAC alone. It can be both: it may prevent or dissolve some stones, but leave remnants of metabolism behind that can form new stones as well.

 

[azgirl]

Update
Much improved now!

I was more dehydrated than I realized now that tube is being used almost exclusively. Doubled up on water and it's helped thin saliva. No brained, right

Increased cough assist which is also more productive with increased hydration

Running humidifier on high setting

Sometimes simple changes make a huge difference. Thanks everyone!

 

[KimT]

Glad to hear improvement. Thanks for starting the topic. Lots of good info here.

 

[affected]

oh Kay that is brilliant. Glad you are so much improved, but also that you could pin what made the difference and report it here so it can hopefully help others, maybe for many years to come!

 

[KW1234]

Hi Kay

I am fully on tube but I have found I can eat ice which I do constantly as my mouth gets very dry from using the AVAP. It also keeps me hydrated.

Glad to hear you are doing better. My breathing continues to decline. Very scary episode today while using the toilet, lungs refuse to inhale, sporadic breaths, pulse ox dropped to 89.

Karen

 

[patoyeah]

For post nasal drip, an ALS Advocate recommended against decongestant nasal sprays, citing a rebound effect. Yet she did recommend Flonase a few days a week.

Body position effects my coughing episodes. The upright I am, I cough more. When I recline to almost flat ( about 15* from flat ) my body calms down.

 

[Nuts]

Kay, sorry to read you were having such problems, but I'm so glad you are better!

You asked about thumping vest. Matt has the Respironics cough assist, and several months ago his RT updated there software. The new software has an advanced auto mode that does something to the air movement that simulates the chest thumping (a very simplified, layman's explanation). We now use a nebulizer followed by the cough assist. Supposed to be doing it four times a day, but I will confess that it's hard to get all the treatments in with everything else we are doing.

He also gets Guafenisen (sp?) twice a day. It is the component in Musinex that thins secretions without the cough suppressant.

Having said all of that, we are, of course, in the hospital again...

Beckhy

 

[patoyeah]

Like Laurie mentioned most of the stuff I've seen warns that NAC can cause kidney stones, yet this article offers different info. I stopped using NAC for the last couple of weeks, after her warning.


Kidney Stones:

NAC is an effective treatment for kidney stones where kidney stones are caused by calcium oxalate or cystine accumulation. NAC also helps to prevent kidney stones caused by calcium oxalate or cystine.

NAC is more effective for kidney stones prevention/treatment when it is combined with magnesium (1,000 mg per day), vitamin B6 (100 mg per day) and potassium citrate (75 mg per day) - hundreds of patients have been effectively treated with this combination. This combination is particularly effective for people who have previously had kidney stones who would like to prevent recurrences.

Mod Note: URL deleted because 1) It didn't go to NAC, and 2) It went to a commercial site. Gdk