Liquid thickening

[GXTrex]

My dad's nurse nurse recommended "thick it" to thicken liquids for my dad. Have any of you used it and does it work well?

 

[Nikki J]

My mother used it. It worked reasonably well but it is only a temporary measure to ameliorate the problem as swallowing will continue to worsen. Did he refuse a feeding tube?

 

[GXTrex]

I believe he still wants a feeding tube but wants to be able to take foods orally as long as possible. He can still eat cut up meat, soup, mashed potatoes, etc. He currently gets about half of his calories from boost. He has trouble with all dry foods, and sometimes with thin liquids like vitamin water.

Yesterday morning he suddenly was not able to take anything in by mouth. We do not know what happened. Now he is back to "normal" but we want to have this as a backup and to see if it works for him.

He has a clinic visit in a month so we will see what the dietician says and the results of a swallow study.

 

[Nikki J]

Having a feeding tube does not affect the ability to eat if he wants to and can safely. He can eat for fun but supplement as needed or just have the tube in case.

this is a hot button issue for me. My mother did not want one. My sister delayed until almost too late. The increasing struggle to swallow is horrible on both sides and uses lots of energy the PALS can not spare. I have promised myself to get one as soon as it is suggested

 

[GXTrex]

I know and if a feeding tube is mentioned at the next clinic I will urge him to get one. They are not difficult to use right?

I believe he thinks this is the next step of giving into the disease, even though it will make things easier. He has a cane and rollator but luckily he doesn't need to use them yet. He has been limiting his walks.

Did your mom refuse respiratory devices as well? For your sister, did she change her mind last minute? Was she happy when she got one?

Thanks Nikki

 

[Nikki J]

They are very easy.

my mother wanted nothing. By the time she needed anything she had advanced ftd and could not communicate but we honored her clearly expressed wishes that were voiced before onset

if my sister had waited any longer it probably would have been too late. She was so malnourished we had refeeding syndrome and she was only able to swallow at all for another 2-3 month. She agreed after that only was she happy to have it but she should have got it when it was first suggested ( a year earlier)

 

[affected]

My Chris still enjoy the taste of a coffee once a day, even though he had a peg.
I used thick it, and he usually only ended up drinking quarter of the cup, but it was more for the taste than anything.
It makes a huge difference, but of course does not replace a peg.

 

[lgelb]

ThickIt, mashed potatoes, cornstarch, smooth puddings, bananas, nut butters, etc. can all be used to thicken soups, drinks and smoothies. Of course, everything should be blended smooth.

Crumbly, dry food, along with thin liquids, kernels like corn, skins like peas, crunchy food like lettuce, grains like rice, are all usually best to avoid past a certain point.