ALS feeding tube

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terri

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Hi All.

I'm a little concerned and don't know what to think. LB has been having stomach and bowel problems for many months. Speach and swallowing problems started about 2 months ago. The swallowing has not been real bad. Speech is understandable just slurred and weaker. Eating has just been a matter of cutting small and eating slow. Last week I took back to the doc with the stomach cramps he has been having. He gave him some meds that seem to help but the swallowing since then has gotten really bad. We are now trying something to see if it is reflux that may be causing the extra swallowing problems. So far that med has not helped. My question is, can swallowing go down hill to the point of needing a feeding tube in a period of a week? He can swallow liquids very carefully and with much effort. Food other than a little yogurt has not been staying down - if he is able to swallow it. I will check back with the doc on the stomach cramp meds again today if things aren't better. It just seems unlikely that could cause this problem I think.

Any thoughts.
Thanks,
Terri
 

TBear

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Hi Terri:
If I know anything about this illness it's that anything is possible, even a rapid decline. Usually the deciding factor for a feeding tube is whether eating normally is no longer safe or that LB is losing weight ie not keeping it on. That's when we went for it... but she still was able to drink her wine with dinner!

Cheers

T.
 

Leslie

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feeding tube can help

Dear Terri,

My dad (Dx. June 2005-bulbar) had a PEG tube placed @ 2 months ago. He can still eat and drink but it takes so much time and can be tedious, his swallowing reflex is still okay but can be affected by his sitting position. my dad started losing weight because eating had become such an effort and he was becoming slightly dehydrated. His doctor encouraged us to get the tube sooner than later - to help my dad feel better and keep him well hydrated.

Getting the PEG tube placed was rather easy- a 10 minute procedure and an overnight in the hospital (just as a precaution). My dad's abdomen was sore for @ 1 week. The tube is easy to manage and my dad is in charge of his "feedings and waterings"- he feels better and has peace of mind that he is getting enough calories.

He still eats his favorite foods and has his martini's!

Good luck, Leslie
 

dana

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My dad also has a PEG tube and it was the easiest and smartest thing we have done thus far with the disease. Dad was able to regain weight that he had lost, regained energy from the nutrition he receives in the PEG, and does not have to worry about choking on food or water anymore. Dad no longer eats or drinks anything through his mouth (because of his choking) but he is able to get the correct amount of nutrition he needs through the feeding tube. I do wish we would have done it earlier. I think dad would have felt better sooner, but what's done is done. Dad avoided getting the tube out of fear, but once he got it he was so glad that he did. For dad, the feeding tube has been a major blessing.
Dana
 

terri

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Thank you everyone for your replies. I guess most of LB's sudden problems were from a medication for bladder cramps. They really put him under until we could get them out of his system. It took a whole week. We started a antibotic again today to clear the infection but no more cramp medication for him! His swallowing food is still an effort but better and his drinking is better. Now that he is better, he wants to wait a while before talking about the feeding tube. Smart? I doubt it, but he gets to make the call.

Thanks again everyone.
 
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