PEG feeding

[buzzbay]

Good morning. This thread is very relevant to our family just now. Mum has PSP and chokes for prolonged periods fairly regularly when being fed pureed diet orally and on her suspension medications. Mum was due to have PEG fitted last week but I had so many questions about it that I asked if we could postpone it temporarily. The problem is I think only water, Ensure drinks and medication would go through tube and therefore it would not eliminate the choking risk. If it did and mum was nil by mouth, we would have gone for it. I fail to see the benefits of putting her through that procedure when she is still at risk of choking, apart from her getting the goodness from the Ensure drinks. I feel I am missing something and any help would be much appreciated.

[Zerachiel]

Hi, please have a read of some of the other threads regarding tube fitting, there are couple that cover most aspects.

Feeding tubes are best fitted before there is a desperate need to allow you to move over to them as necessary.

If she had one fitted and you gave her all her dietary requirements and meds through it this would reduce the risk of chocking significantly, but not remove it completely.

If she is chocking and inhaling/aspirating then this will cause infections in her lungs leading to pneumonia. If she is only having a little water in her mouth and safe drinks this is less likely although saliva does contain bacteria so there is still a risk, good oral care is a must

[LARWLSN]

Hi, mom had a tube put in almost a year ago... she takes nothing by mouth, so she no longer chokes because of food or drink, but she still chokes on her own saliva. Just as badly as she did on her food. It is a terrible disease. A tube eliminates choking on food and liquids while keeping the patient feed and hydrated. Does it solve all the problems? No. Does it help with a lot of the big ones? Yes.

[Zerachiel in reply to LARWLSN]

Hi LARWLSN, does she have medication to help? Carbocisteine to help keep the throat clear and Glycopyrronim to reduce saliva production. Also do not lie her on her back, use pillows to behind her back to keep her on her side. These are working well for us.

[LARWLSN]

We have been using botox to keep her from drooling, which helps. She is almost never on her back, we have her propped up or on her side 90% of the time. She can choke while sitting up in her wheelchair. Have not heard of Carbocisteine though.. thanks for the tip. Will look into that.

[Zerachiel in reply to LARWLSN]

We also have botox but it is hit and miss if it works well so she has Glycopyrronium too. the Carbocisteine is to keep the secretions in the throat fluid or less sticky. If you are offered Hyoscine patches for saliva be very cautious, it can affect the brain making a person with PSP very impulsive and a danger to themselves. There is also Atropine, an eye drop that is placed on the tongue to reduce saliva.

[LARWLSN in reply to Zerachiel]

We tried the drops on the tongue.. that was the first thing we had a go with, that didn't work. Hyoscine patches.. not heard of those either. No need to worry about the side effects to that, as Mom can no longer do anything voluntarily. Thanks for the tips!

[Purp23]

Hi Buzzbay, my husband has PSP, diagnosed 2018 and we took the decision last October to get a PEG fitted. He was really getting very choky before that, so we decided that we would give it a shot. I also posted on this page about getting one fitted and there were a few replies about the pros and cons and the timing of getting the PEG fitted, not sure if you have read that thread but I found the reply’s very useful. So we are a few months in and it has made a big difference, he is still able to swallow soft foods without choking but that is getting less and less. We have managed to cut down on the stress of him having to take tablets orally as we just dissolve them and put through the tube apart from his morning tablets which he gets with custard and a drink of thickened water which he gets in a systema bottle with a screw top teat like bottle. We have been able to up his water intake through the tube also which makes a big difference. As this brutal condition progresses it will change but we don’t regret getting the PEG, and it is quite easy to operate. He also gets these Fortisip shakes through the tube to try and keep his Calorie intake up and the weight loss to a minimum. Best wishes Px

[Richard33]

Buzzbay

Just posted this reply to Redjune's post a few days ago on the same subject-

Ruth (64) had a PEG fitted quite early in the progress of the disease - she was still able to eat (and is still 18 months later) soft regular food, but she was struggling to drink. The fitting took just a 6 hour stay in hospital during the day and our daughter was able to stay with her for the whole time except the 20 minutes in surgery- as Ruth was struggling with transfers and could not talk to the nurses.

In the 18 months since fitting, Ruth has stayed pretty stable - helped hugely by the fact we can give her water 4 x a day (and laxative if needed). So no more dehydration and constipation.

I am afraid everyone's circumstances are different. But our experience has been very positive.

Richard 🙂

[DreamWeaver1]

Hi Buzzbay,

I see your concern about the choking, my wife has occasional trouble with choking on phlegm, which at times can be alleviated with more hydration. We do have a little suction unit, so if I need to get fluids out of her mouth, I can use that, but I don’t use it that often, I usually use a dental swab and that clears it.

I recently replied to Redjune’s post and told a bit about our experience with the peg tube that she has. The Mic-key “button” is low profile and makes dressing and transfers much easier. With her original tube I always feared that it would get tugged and pull out. The low profile styles relieve that issue.

As it’s true that you will put water, medications and ensure (we use Fibersource) through the tube, she can have other finely pureed - liquified - foods. When we were preparing to leave the hospital originally, I was given the option of preparing all of Karen’s meals and pureeing them to be given by mouth. It was mentioned that this would be much more expensive and far more work than if we gave her the Fibersourse (Boxed food). The nutritionist said that she could have liquids that were honey thick or nectar thick, but to avoid clear fluids. I found the IDDSI website iddsi.org where they show how to tell if what you are trying to liquify is thin enough, as well as what foods are better for your level of swallowing ability.

We started out with 4 or 5 boxes of food a day, and I supplemented that with eggs fixed various ways at breakfast, with toast, waffles or pancakes, all in small bites. Dinner was similar soft items. As time progressed, she wanted to be able to take larger bites and she got to be eating lots of different textures. It’s been over 2 years since then and that worked for quite a while. The last few months she hasn’t been swallowing as much, but still enjoys the tastes of things. When she wants the caffeine from coffee, I can give her some (room temperature) through the tube. With cream so it’s not too acidic.

She is now getting 6 boxes of food a day and about 750ml of “free water” daily. All of her medications go in and I don’t have any fears that she is not well fed. It’s possible that if I raise the free water to about a liter, that she would get rid of the phlegm. We did get Biotene, which is for dry mouth, and it seems to help some with the phlegm.

Once she has the peg tube, she can have the choice of taking things by mouth, and may prefer to sample tastes rather than needing to get nutrition orally.

Here is a link to Nestle’s tube feeding websitefor the US.

nestlemedicalhub.com/patien...

I hope this helps, we are certainly delighted that she has her tube.Good Luck!