ALS+Chrones disease+peg=dehydration

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Gardba1

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Hi my mom has bulbar ALS and recently got a peg (not npo yet but pretty close to it). She also has Chrones disease so is suffering from dehydration. Does anyone have experience with this? Suggestions? Obviously it's a question for the doctor- she has been in hospital 3 days with no solution (besides IV salt water).
Thanks in advance!
 

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welcome garbda

are they giving her lots of water through the peg?

It is a bit complicated if she isn't absorbing the water well, the drip should help and hopefully a dietician is helping work out a good formula she can tolerate and how much fluids to give her.
 

Gardba1

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Yes she is working with a dietician. They are trying saline and potassium supplement. Thanks for your response!
 

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Crohn's is a treatable disorder. I don't understand why she wouldn't be eligible for something more substantive than saline solution. ALS only worsens when malnutrition occurs, which is what days of saline sounds like. I trust that your mom's neurologist is involved with her hospital care.
 

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So even though she is dehydrated, are they getting peg formula feeds into her as well as the drip for more fluids?
 

KimT

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A 16 ounce bottle of organic coconut water has over a gram (1,000 mg) of potassium. I drink one each day. Maybe that could supplement her water. Ask the nutritionist.
 

Gardba1

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Crohn's is a treatable disorder. I don't understand why she wouldn't be eligible for something more substantive than saline solution. ALS only worsens when malnutrition occurs, which is what days of saline sounds like. I trust that your mom's neurologist is involved with her hospital care.

I guess the crucial aspect of her Chrones is she has an illeostomy.
I'm not sure what you mean about being eligible for something more substantive... She had IV hydration but we are trying to figure out how she can stay hydrated through PEG. How could the neurologist could help with the hydration issue? Seems like out of scope of practice
 

Gardba1

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So even though she is dehydrated, are they getting peg formula feeds into her as well as the drip for more fluids?

Yep! She's doing a lot better- with addition of saline solution before and after formula she's gained 10lbs but now is having difficulty because is retaining all that water! Seems like it will just be a process reducing saline to reduce the water retention but not too much so she stays hydrated!!
Thanks for you reply!
 

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I hope you can keep us updated on this.

I was wondering about the issue of simply pumping more water through the peg could simply see a lot of it being retained with her issues.

I hope you can find the right strategy, and can share it here. Great news that she has gained some weight, that is a great step in the right direction!
 

Gardba1

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After gaining 15 pounds in a week due to water retention some adjustments have been made to the salt/ water ratio and mom seems to now be getting enough hydration through that. It has been about two weeks without an ER visit so we think this is the ticket (I can't remember the ratio but significantly smaller than what she started out with). She also continues to take potassium pills crushed and pushed through PEG.
Thanks everyone for help!
 

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What wonderful news!

Even though it has taken a little while and hard work to trial and monitor, you are on the right track now and are likely to notice any deviations and start adjusting strategies to respond.

Thanks for updating, I'm so glad you are on the up with this!
 
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