Failure to Thrive

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Labinma

Active member
Joined
Sep 14, 2016
Messages
73
Reason
CALS
Diagnosis
06/2014
Country
Us
State
Ma
City
Boston
Has anyone had any experience with a PALS hitting such a low weight that they can reach the stage of "failure to thrive"? My PALS refusing feeding tube at the moment and losing weight by the day. Is the point of failure to thrive a point of no return with fast decline?
 
Just realized I answered my own question. I guess more predominately I am asking, has anyone experienced this with their PALS specifically and if I can gently inquire what occurred during that time. Thank you
 
Yes I can answer, and in the interests of helping I'm happy to talk the hard stuff.

My Chris went into a starvation mode by refusing the peg and having increasing difficulty in swallowing. He was dehydrated as well.

He did then say he was ready for the peg. But he had passed a point of no return both physically and mentally as he also had FTD.

I was able to keep him hydrated, but he never managed to put weight on, he kept losing weight albeit a little slower than before the peg. He would be nauseous after slow small feeds and refused real blended food, preferring to simply refuse a feed because I think that gave him a higher sense of having some control by saying no. Please do understand anyone reading this that he had FTD and I knew him very well, I'm not suggesting this about other PALS, but this is what was happening here.

They become less and less hungry as the digestive process slows down and they will have less and less energy as the calorie input is lowering. If he is also not using bipap then the energy will decline even further.

What I do know of many other PALS who did not wish intervention is that good palliative care can give a very peaceful time as they decline. It is still a very individual thing as to how fast or slow this will be. For my Chris the aspiration pneumonia really did tip things, mainly because on top of the toll it too, he developed many fungal infections from the fevers and antibiotics and he declined fairly rapidly. He was the most peaceful in his last week of life as we could give him effective palliative care at home.

If your PALS does not want anything like peg/bipap I would highly encourage you to check out your hospice services and have them discuss with him what his wishes are so you can plan with him.
 
Thank you so much. I fear my PALS is on a similar path as the personalities sound similar. Today he mentioned he thinks he is "coming on with something in his chest" ugh. I pray it is not going to turn into or go what I have read so many times as the path of phenomena. But talking frankly here, say it is just that the beginning of what follows? Can they get admitted and given antibiotics to fight it, and/or is because the weight has declined to where it is, the chances of them recovering from that are slim? My gut had this feeling and I cant believe it if is happening. textbook to typical decline of ALS from all that I have read and studied. Ugh. Problem being with his personality the idea or him knowing I inquired about hospice will make him upset. I have felt I cant do anything on his behalf as it is responded with incredible denial (which I know he believes keeps him going). I have never felt more paralyzed and helpless in my life. Last question, then what do I do? Contact his ALS team myself and tell them my concern? They then in turn tell me what to look out for and direct me to what to do? Thank you for sharing on such a tough and sadly sensitive subject with me.
 
ps....of course I gently ask him what if he were contact his team and just mention he feels something in his chest and he is now refuting and regretting he mentioned anything. Says he feels fine, its nothing, he has had little colds before on and on. I just cant get involved it seems. I felt like saying well you were never at this weight when you had those little colds. He did get his flu shot which was good.
 
I'm sorry it is very difficult indeed.

I'm not sure about personality as such because with FTD my husband completely lost everything of his personality. But maybe that is what you mean.

If he develops an aspiration pneumonia he will need treatment in hospital. We were in hospital for 4 days and as soon as he came off the drip I advocated to bring him home as it is a nightmare looking after a PALS in a hospital. My equipment and setup at home was so much better and I could do everything my way. The doctor agreed I could care for him better at home than the hospital could. Chris needed hospital at first however as he needed the drip containing antibiotics and a little O2 in that first 48 hours.

He was so debilitated by then, he was around 50kg and still losing weight.

Definitely it is a horrible feeling of helplessness, I am also a problem solver. I had to learn to let go.
 
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