thickener

[Poppypolo]

Hi has anybody used baby rice as a thickener, my husband can not get on with the thickener from the doctors, we are dealing with constipation all the time because of the thickener, looking for another answer to be able to get more fluid into him this hot weather

[WifeLilyRose]

No but my husband is at late stage PSP. He will drink liquids with thickener in but it will often cause coughing. He is on 3 x 10 mls of Carbocisteine per day which is helping the mucus and phlegm problem in his throat. In this hot weather too he is enjoying puréed tinned fruit ( pears are his favourite but today he tried fruit cocktail ) blended with either vanilla icecream or cold custard. This all counts as liquid for him. He’s eating mashed, cooked vegetables ( carrot, sweet potato for example ) cold at the moment mixed to the right consistency with a little cold milk. All hot meals are blended and I add dried mashed potato powder to thicken them if need be.

The speech and language therapist has been really helpful. She’s been assessing Paul’s swallowing ability regularly and always has positive, helpful suggestions to pass on to me as the situation suddenly changes, throwing up new challenges.

See I’ve gone on a bit. Do hope I’ve been of a little help to you.

[Poppypolo in reply to WifeLilyRose]

Thank you yes I also do the tin fruit and yogurt, ice-cream or custard, smoothies seem to be that bit thicker also. Such a puzzle some days to give him a variety of food.

[WifeLilyRose in reply to Poppypolo]

My husband is almost at the point when he won’t be able to swallow ( he took the decision not to have a PEG ) so he can have whatever he fancies until then. Sadly his appetite is diminishing pretty fast. What a terrible disease this is to witness in a loved one. x

[Poppypolo in reply to WifeLilyRose]

We are just at the stage if to have a peg or not, on reading up on it I am not sure it will be as good as made out to be seem like can be lots of problems. He has lots of problems with constipation though having the thickener to help him swallow it’s a no win situation

[Martina_MP]

Hi Poppypolo, You didn’t mention which thickener is getting him stopped up. The xanthan gum powdered drink thickeners such as Nestle Resource Thicken Up CLEAR, are more pleasant than starches, and our doc advised that they are compatible with Miralax, an effective laxative (polyethylene glycol 3350), which she recommended we use routinely. Miralax comes as a powder that can be added to a drink along with a gum-based thickener, and it is safe for long term use. Miralax is NOT compatible with the starch thickeners such as regular cornstarch-based Thickenup—it will reverse the thickening with those. We started with a full dose of Miralax for a couple of days but my mom has had a very good response, so we are cutting down to a half dose every other day or even less, in a morning drink. Maybe it will work for your husband.

[SimonandMaria]

Hi poppypolo,

not sure this helps : we use no thickners at all, just found the ideal mix that is thick enough…

for water intake : you dont necessarily have to give water plus thickner, you can give food which is rich in water : yoghurt and applesauce for instance.

We live in France and apple sauce here comes in as many varieties as forrest gump can think of shrimp recipes… apple sauce, apple and vanilla sauce, apple and apricot… apple and strawberry, apple and peach, … and and and…

I give my wife at least 300 ml at times 500 ml of apple sauce a day.

she is well hydrated despite only giving her “food” and not a single “drink”.

The colder the better… icecream for instance helps one trigger the swallowing reflex.

on constipation :

First i learnt that even 6 to 7 days without going to the toilet wasn’t a real problem… it actually became a certain routine, for a few months it was every monday pm…

then we found “macrogol 4000”, we are still playing with the ideal dose, and meanwhyle maria now is very regularly going to the bathroom every 3 days. The constipation is actually an advantage as it helps manage the fecal incontinence… I know now that on 3rd day i have to bring her to the toilet for a longer whyle. Btw, abdominal massage on day 2 and 3 help.

Maria is on her 7th year of PSP since first symptom, was going to be “pegged” 2 years ago, but then redeveloped some way of swallowing… doesn’t always go the right way…She smiles every day and we find plenty of opportunities and reasons to be happy, despite the illness.

Simon

[Poppypolo in reply to SimonandMaria]

Thank you for helpful message, husband is bedridden so he has no movement it does not help with constipation, I get your understanding where I am trying with drinks you do not worry as long as she has apple sauces and ice creams.We have just come out of ten day constipation thought these thickeners so no more will I use them although the doctor will not have it that is the cause his answer you are not having enough fluid.

Very hard here at times to get the right help with the right people.