Old 07-13-2018, 08:31 PM #1 (permalink)
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Default Reflux or what?

The last week or so my PALS would have some coughing after finishing a gravity tube feeding. It seemed as if some formula was coming up by reflux and causing him to cough. It was brief and would resolve. I made sure he was at 45 degrees at least while receiving a feeding and for 45 minutes afterward. He would get 250 mil of Isosource at a feeding with 100 ml of water before and after. This coughing up formula was a new thing.

Yesterday it got progressively worse with each feeding until the third one he was coughing and choking for an hour. I took him to the ER. His lungs looked clear in the chest X-ray but he had a higher while blood count. The admitted him and gave him IV fluids, and an antibiotic and were watching him. Tonight they started a continuous feed of 25 mil an hour and 250 mil water over 4 hours. They want to see what happens with this and then increase it if all is well.

His ALS doc is a good ways away and I took him to the nearby hospital where our PCM is located. The doc who saw him this morning(with not much ALS knowledge) thought it was a stomach bug because "ALS doesn't affect digestion like this."

My gut feeling is he is wrong but maybe I'm programmed after 18 months to think everything is ALS when he may be something common and average.

I know there is a wealth of knowledge here and wondered if I could get some insight.

One other thing is he is hiccuping a lot. He has never had reflux before ALS. He has FTD(language variant) so can't explain to us what he is feeling when this happens.

Mary
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Old 07-13-2018, 08:57 PM #2 (permalink)
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Default Re: Reflux or what?

I think you are more right than the doc. See the attached for one mechanism for this problem. There can be more solutions than are mentioned, such as a possible benefit from a change on formula and/or feeding regimen.

You can always ask the ALS doc to consult informally with you or the admitting doc (e.g. via call or email) even if s/he doesn't have privileges at the PCP's hospital.

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Old 07-13-2018, 09:29 PM #3 (permalink)
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Default Re: Reflux or what?

I agree reflux is most likely rather than a stomach bug. I do like their plan for slower continuous feedings (rather than bolus) with more persistent elevation of the head of the bed. Also trying a different formula, which may allow the stomach to empty faster.

Even though the chest X-ray was “clear”, he might have still aspirated into the lungs which could account for the coughing and elevated white blood count. The antibiotics weren’t a bad idea just in case.

Hiccups usually indicate spasms of the diaphragm. I don’t know whether or not they’re increased in ALS, but it wouldn’t surprise me if they are. Can you get partial laryngospasms? Maybe. I’m not sure if anti spasticity meds such as Baclofen would help, but it’s woth asking the ALS doctor.

Sometimes Reglan (Metaclopramide) is used as an anti reflux measure, but it has a lot of side effects. The proton pump inhibitors such as Prilosec or Nexium are good for neutralizing acid. However, there is some suggestion that lung infections are more common on these drugs because of how they alter the pH of gastric fluid.
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Old 07-14-2018, 12:29 AM #4 (permalink)
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Default Re: Reflux or what?

Agreed, long-term options besides the PPIs are preferred.

Hiccups are common as air/liquid flow goes both ways as the muscles weaken. Sometimes they become vomiting and/or coughing.

Diet and the right mixing of solids and liquids (or the type of formula) can also play a role as some foods help absorb the air and others contribute to it, just as with everyone. This is another reason corn-syrup based formulas may be problematic in overstimulating the digestive process.
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Old 07-14-2018, 07:05 PM #5 (permalink)
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Default Re: Reflux or what?

He has had a continuous feed for the last 24 hours at about half of what he needs and has tolerated it well. They are now increasing it by 10 mil an hour every 6 hours to get up to the target amount. So far, so good. He seemed in better spirits today, but I'm sure sleep and nourishment helped!

After this gets resolved I'll consult with the ALS Clinic dietitian about a change in formula to hopefully deal with the hiccups.

Thanks so much for the insight!

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Old 07-14-2018, 08:14 PM #6 (permalink)
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Default Re: Reflux or what?

Glad to hear things are on the right track.
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Old 07-16-2018, 07:10 AM #7 (permalink)
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Default Re: Reflux or what?

Well of course what worked well in the hospital didn't so much at home. Dave tolerated 70 mil an hour fine in the hospital. I got him home, set up the pump (very proud of myself for that) and got it working fine. We have an adjustable bed and I made sure he was at the proper angle. During the night he kept sliding/compressing down like an accordion. He just has no muscle to speak of left in his arms or torso so he's pretty limp. I think the hospital bed is longer so he couldn't get so far down it. When he'd do this he'd of course sort of flatten out and then get the reflux. He still has fairly strong legs so I'd get him out to reposition him, but that's hard to do in the middle of the night on a bed that's at an angle. And even 45 degrees seemed to be not enough to prevent the reflux. I am so worn out and stressed. At 5 am I asked our 23 yo daughter for advice. She said turn off the pump and sleep and figure it out today. Everything seems so much more desperate in the middle of the night! We have a power recliner and I put some of that non-skid rug netting stuff on the seat and tried it out. I couldn't move my butt. So maybe that will work to keep him in place. If he can tolerate 100 mil an hour the feeding could be done in 12 hours and he wouldn't need it at night. Any other ideas would be appreciated!

Dave is having his breathing tested today. Not feeling good about this

Mary

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Old 07-16-2018, 07:29 AM #8 (permalink)
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Default Re: Reflux or what?

Mary, do you use the control on the hospital bed that bends the knees? This helped my husband from sliding down. He also needs the
head of the bed up to prevent reflux and was sliding down in the bed until we started doing this.

I also use the pump at a slow rate to prevent reflux and this helped a great deal.

Sharon
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Old 07-16-2018, 12:35 PM #9 (permalink)
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Default Re: Reflux or what?

Thanks Sharon!
The bed we have isn't a hospital bed but an adjustable bed. It does raise the legs but maybe not bend. We might have to get the hospital bed, but I was hoping not, since this one is king and we can both sleep in it. It was a donation to the ALS Association from a CALS, and had originally gone to her from another CALS. They were both able to use it until the end.

Saw the respiratory therapist and dietician both. Dave's breathing was the same, but his swallowing is weaker and the muscles that keep things down are probably weaker. We are trying a 12 hour continuous feed during the day. He's now situated in the recliner and I'm praying the combination of posture and feed work!

Sharon - What rate do you use and for how long? Does your husband have feedings at night?

Mary
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Old 07-16-2018, 12:49 PM #10 (permalink)
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Default Re: Reflux or what?

Mary,

I found that giving Frank the majority of the feeding at night was easier than during the day because it takes a long time at such a slow rate. I empty 4 containers of Jevity into the bag and run it at 70 cc/hour. I start the pump at 8PM when he is in bed and stop it at 6:45 AM when I get him out of bed and into the chair. The remainder of the Jevity left in the bag is started at 3 PM and runs until empty.

Sharon
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