How to stop reflux related aspirating issues with PEG /PEG-J in PSP?

[Aslin]

Hi everyone,

My dad has PSP and had PEG tube fitted recently. He was ok with blenderized food but then we changed it to formula to help him gain weight. Then he Developed reflux and started aspirating the formula. Although we went back to blenderized food he continued aspirating. Before PEG he never ever had a reflux so it must be due to the muscles loosing the strength.

He is currently at the hospital due to another chest infection. As soon as he has more strength the doctors is planning to turn his tube into PEG-J (as a last option before fitting PEJ then perhaps tracheostomy). The doctor also giving him some stomach tablet to help digesting the food quicker and decreasing the amount of food given each time. We hope this stops him aspirating again.

I am looking for some advice on what else we can try before going to tracheostomy route? There must be some stronger medicine to stop reflux or help digesting the food even quicker.

Many thanks

Asli

#psp #peg #pegj #pej #tracheostomy #aspiratingformula

[Aurala]

My husband has a peg tube since January. He’s complained of reflux once, but he coughs at the end of nutrition although it’s better now that we have slowed the drip and decreased the PM amount. The other night he was trying to expectorate after the last feeding and brought up some formula. Frightening. Watching him closely. Other than that, he has tolerated the peg physically pretty much. Lots

Of hydration. More than we were told. We didn’t get much information out of the gate. One thing that every medical personnel has said though is that aspiration on a peg is still an issue. I hope that you get this sorted out. I’d like to know what anti reflux Med ( famatodine) they are using and the dosage and frequency once they arrive at a plan.

[Aslin in reply to Aurala]

Hi, thank you very much for your response🙏 Dr is giving motilium tablet to help digest quicker. Lets see how it will work following the Peg j process. I am praying for your husband 🙏

[Hidden]

The only thing that works for my acid reflux is baking soda. Half a teaspoon to a few ounces of water. With PSP I don’t know that it would work. I have to belch several times after I use it. That could bring up stomach content. With someone who has swallowing problems this would be a problem.

[Aslin in reply to Hidden]

Thank you 🙏

[CathyHide]

Hi Aslin, These are tough times for you all. My husband had the same trouble with reflux from a PEG which is basically choking. The illness is progressive so by the time they need a PEG their quality of life is deteriorating and each intervention takes its toll. When my husbands reflux was so bad he could not breath I called for an ambulance and they suctioned him and he was taken to A&E but he had decided he didn't want to spend any more time in hospital so refused to be admitted. I was trained to suction and managed another week with minor reflux but the next major episode I stopped the feed and he indicated he did not want to be suctioned. He had a DNR on his file and the doctors felt the suctioning that was required was resuscitation.

PSP is an horrendous illness and hard as it is on the family who want their loved one around for as long as possible we do have to consider their quality of life and their wishes. My husband was 70 and could still manage a smile and could mouth I love you to his family who stayed with him until the end. He always thought he would die in hospital from a fall, choking or pneumonia but he wanted to go peacefully at home with his family. Looking back we are thankful we have good memories of those last days when we could talk to him and listen to music and all join together.

[Aslin in reply to CathyHide]

Thank you very much for your response 🙏 I am so sorry to hear that you lost your husband. It is indeed a horrendous illness that words cant even explain.. although we hear about the journey and that we should be prepared its so difficult to be prepared for it. Everyday we have together is a bonus.