Persistent GI issue and weight loss

[wtici]

My mom was diagnosed with limb (arm) onset in 2021 in China. I took her to Duke in 2023 and had a revisit this March. Her fine motor score is 5, other categories are ok.

She returned to China end of April. She probably caught something on the airplane and started coughing days afters. It turned out that she had bronchitis. With medications, it took her a couple of weeks to recover from that. But right away, she started experiencing GI issues and had diarrhea frequently. She went to see different doctors and did all kinds of test, everything seems fine. She is careful about what type of food to eat, she even stopped some other medications that she’s been taking including Tudca to avoid upsetting her GI system. Still, the diarrhea is persistent for the past 2 months. She already started losing weight in March due to anxiety and insomnia. She has lost more due to the long jouney home and all the problems afterwards. She is 5’-6”, was 122 lb in April, probably lost 5 more lbs now.

One explaination to her problem, as she told me, might be that the Cephalosporins used to treat her bronchitis also killed probiotic in her GI system. Could it be the very reason for her persistent diarrhea? She is certainly taking some medications to help with the issue, but not much improvement, it might just take a long time to restore. Any suggestion on the medications?

Also, is it wise to stop taking Tudca? Her progression used to be steadily slow on her arms up until now. She has more difficulty with feeding herself, and started experiencing fasciculation in her leg frequently, which is a sign that the disease is progressing onto her leg.

Sorry about the long post, had a call with her yesterday. My heart gets heavier every time after the call. Thanks for anyone’s response in advance, knowing that I can always get advices and comfort in this forum!

 

[Nikki J]

Has she been tested for c diff? Unfortunately common after antibiotics. Otherwise probiotics can help but c diff is the big worry

Tudca failed its trial earlier this year so probably it wasn’t helping. Being sick and weight loss can cause progression

 

[wtici]

Thanks for your response Nikki! Can you be more specific on c diff? I will ask mom about it.

Doctor told us to stop taking expensive sodium butyrate because of the failed phase 3 trial, but she can continue with the Tudca. At this point, we are still having hope for Tudca.

 

[Nikki J]

Clostridioides difficile is a bacterium. It would have been a stool test. It is not that uncommon after antibiotics especially in the vulnerable and those in hospitals and longterm care. I would think it would be the doctor’s first thought but I would make absolutely sure it was ruled out. I might even ask for a repeat test if one was not done recently

 

[wtici]

Thanks for the additional information, I also did some online search for the term. Just like you explained. I think she mentioned stool test, but I will confirm that she had this specific test.

Another thing she mentioned that she has this pain with her elbows. Her arms has lost a lot of muscle, very bony, the pain is not unbearable but certainly uncomfortable. Is this type of pain common for PALS? Is there anything to help with that?

 

[Nikki J]

Not sure about elbows. She may need to have better support

Going back to your tudca comment. There was a separate trial of tudca besides the amylyx one. The separate tudca failed too.

 

[lgelb]

Yes, that is common. We don't have much extra padding on our elbows to start with. So I would make sure her forearms/elbows when she is seated or lying down are always resting on foam pillows or blocks.

 

[wtici]

didn’t know about the failed separate Tudca trial, bought her a year of supply to take home. Will ask her Doc here and look up more information online.

Thanks for the recommendation on the padding. It sounds like she could feel the pain in any position, not just when she is seating. Knowing that the pain is common helps, at least it is not something to be particularly concerned about.

I told her know about the C diff and asked her to check with her doctor on her next visit. For now, she’s been taking Trimebutine maleate and some probiotics but nothing seems to help much.

 

[tmflanagan123]

We have just the opposite problem. Philip has weight loss with constipation. Just diagnosed in June. We went to Tampa VA. Being a nurse for 45yrs. isn't helping me very much. He isn't always cooperative. he's been switched to a trilogy CPAP, can't use because he complains of stuffed up nose and it suffocates him. a nose irrigator was ordered for him over a week ago and I'm finally getting it today. So hard to get him everything he needs to work on . Breathing is the hardest.

 

[lgelb]

Just a note to avoid confusion -- the Trilogy is a BiPAP, and is also referred to when used without a trach as "noninvasive ventilation."

Most often feeling stuffed/suffocated on the Trilogy suggests minimum pressure and/or target volume is set too high. PM me if you want help with the settings.

For general nasal stuffiness, a baby nasal aspirator can help.