Help ?….

Jdeanda

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Question, my dad has ALS bulbar onset for about 5 months already. He’s lost tons of weight and just had a peg tube placed last Thursday. Since we started feeding through the tube 4-6 formula bottles a day he had started feeling like he had life again. We were all so happy knowing he’s getting the nutrients and all meds that he needed. However we noticed he had been getting up a lot at night to use the RR. So we decided to stop feeding after 6 and he could still eat a few bites of cake or something like that. Well it’s gotten to the point where he doesn’t want to go anywhere and he can’t sleep cuz he always has the urge to pee. He goes all the time and he says it’s just a little trickle but the urge is there. He didn’t sleep last night because of this. Is this another symptom of ALS ?
 

lgelb

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If he was dehydrated before the tube, his kidney function could be roaring back, etc. and he could have had some small stones/calculi if he were really dehydrated. that could be causing irritation, or a bladder /kidney infection., even without fever What about his BMs?

I wouldn't restrict fluids right now -- I would try to see if he can reset. If that doesn't happen in a few days, he might need meds or catheterization so I would consult with his PCP.

If his bladder feels full to him when you touch it but he can't pee it out, even after a BM, he's retaining urine and needs to be seen.

Best,
Laurie
 
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affected

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It's not a direct ALS symptom, so please get him checked out.
Catheterisation is often used when a PALS can't control things, but if it is just at night there are condom catheters that can be popped on at night so he can sleep soundly. That's all providing he has been cleared of a bladder infection.

I agree his body might also just be adjusting to being well hydrated, please don't limit fluids, though for sure not giving him lots of fluids at night is probably a good idea.

Let us know how you go.
 

Jdeanda

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We ended up taking my dad to the urgent care. They suspect its his prostate. They catheterized him and he has a huge relief. Cath is in until he can get an appt with the urologist. (which that's a whole other issue)
 

affected

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I'm so glad you are getting this sorted - having ALS doesn't stop a person from developing any other medical issues and we often look for an ALS reason for everything because that is what's in our face.
 

Jdeanda

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Yes it definitely feels like everything is related but i know its not. I had to reassure my dad also that what they think he has is BPH and its common. However we did notice that he is also looking a little yellow. We have no idea why, but we both noticed it. Just another piece to this puzzle.
 

Nikki J

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Did they do a blood chemistry panel? Is he on riluzole or other meds that are metabolized in the liver?
 

Jdeanda

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I do not know when they last did blood work on him. He saw an urologist on Wednesday and his prostate was super inflamed the dr couldn't exam it. So he put him on some meds and has to keep the cath and next week will have some sort of procedure done to see what is going on. This dr was intrigued with my dads dx. He has never treated someone with ALS> So he doesn't know if it could be related. He is for sure taking riluzole .
 

Nikki J

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If he is jaundiced he needs to have blood work checked. It sounds like he needs bloodwork because of his other symptoms too Since he was only diagnosed in July I assume the riluzole is new since then. When you start you need liver blood test before and frequently for the first months. I think I had 1 month , 3 month and 6 months check but it might have been once a month for 3 months. If you are going to have a liver riluzole issue it usually happens early. I am now on yearly checks
 
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