Hi everyone,

I haven't posted in awhile. My partner finished his radiation treatments about 3 months ago and has just begun trying to eat again for the past few weeks. He is still using his PEG tube for the majority of his nutrition and he isn't enjoying trying to eat. He can't taste most things very much and he wants to be off the PEG but he wonders if there is a liquid alternative to his formula.

We finally got to see a speech therapist and she suggests that he try to eat and use chewing motions even though he cant really chew. When he had his surgery they took all of his bottom teeth and he also can't feel what is going on inside his mouth. I guess that entire side of his face is still numb and he cant feel his flap. He is now able to move what is left of his tongue but the flap is tethered to the bottom of his mouth. So that is one of my questions. Does anyone who has had a flap tethered to the bottom of their mouth know if this is going to be permanent. I plan to ask his doctor when we go next week. I am just trying to find out if there is anything else I should ask him. Also, if it is permanent, were you able to figure out ways to mash your food in your mouth with the remainder of your tongue and I guess the roof of your mouth. That is the only way I can imagine he would be able to do it. As of now, he has been eating applesauce, pudding, and I made some beans last week. He used the blender and made what ended up as pretty much, bean "juice" . I was hoping to make it a bit more of, maybe a pudding consistency but he actually enjoyed the beans more than anything else he has tried so I'm just letting him do it his way.

I am guessing that the chewing motions his speech therapist wants him to do, will eventually help with his speech as well. She didn't give him any other exercises to do and hasn't worked much with him on his speech. He has only had 2 visits and a swallow study done. She has mainly talked to him about trying to eat more.

Does anyone have any links to any particular exercises to help with speech because we weren't really given any and/or any advice on things that will help him with eating, maneuvering food in his mouth?

Thanks,

Pam

Hi Pam!

I am 7 weeks out of radiation and learning how to eat again with a tongue flap that will not move. I have NO TONGUE. Nothing. Notta. I do, however, have all of my teeth. I was entirely dependent on my PEG until mid January. When I could swallow again (two or three weeks following radiation), I began to slowly swallow liquids. Then, as I got more confident, I began swallowing small quantities of soup. Then, one day, I felt really brave and microwaved soft bread for 30 seconds wrapped in a moist towel. I then dipped the bread in warm, melted butter. I then tried to swallow the very moist bread. At first, this didn't work. I would eventually spit it out. I then tried "chewing" alot of things and then just spitting them out - macaroni and cheese, mashed mushrooms, vegetarian chicken nuggets, etc - ie anything soft that I could also easily swoop in and get out with my finger. It encouraged me to keep trying, strengthened my mouth muscles, made me feel more comfortable with food in my mouth, and helped me figure out how to move food using my finger and mash it with my teeth/any liquid. Then, I began swallowing the bread using the microwave and butter technique. I now swallow donuts and croissants in the same way - except I dip them in coffee. I also will vegetarian nuggets in a moist towel and then swallow that. I've also done oatmeal with alot of extra milk. I then mash it up using my teeth and a little more liquid and then push it back with my finger. If I'm around other people, I stick to pureed foods. I love butternut squash soup and this peanut pepper soup I found online. I make the pureed soups at home, but I also have found that I can manage the drinkable soups that you can buy at the store. I am
now trying to use the PEG as little as possible. Yesterday, I went the entire day without using the PEG. Today, I used the PEG for water after hot yoga. I don't know if any of this is helpful, but maybe one of these tactics will be useful for your partner. I could be wrong, but I think the most important thing is to keep playing - keep trying out different strategies and different foods. Sending you both good vibes!

R0se

PS Im struggling with speech too - I haven't gotten much support from my team either. I try and talk loud and slowly. I'm mostly understood - although, there are definitely sounds I cannot say. I hear that a speech therapist can help you create replacement sounds.

Hi Rose

I am so sorry to hear that. It's good to hear that your are trying new things and making progress though.

Are you still able to taste things? When he was first came out of surgery, he said could taste everything he tried but after radiation, even though it's been 3 months now, he still says that most of the things he's tried don't have much taste.

He drank water immediately after surgery and throughout radiation so he hasn't had any trouble with liquids but I think that even pudding and applesauce are kind of hard for him right now. I believe oatmeal was even harder for him as he only tried that once.

Hopefully he will be able to get implants or at least a set of bottom dentures. I don't know what his options are yet concerning teeth but hopefully that will make things much easier for him.

Right now, I think we may have to stick to pureed foods and soups for a while.

I will tell him about your microwave and butter technique. It would be great for him to be able to eat donuts!

I think that his speech therapist is having him do these chewing motions to make his muscles stronger with the idea that it will also help his speech. Yes, I read about the replacement sounds as well and was wondering about that but I may just be ahead of myself. It's just that since he can't really "chew" I don't think he's actually doing those exercises as much as he may need to.. If that makes sense.

Thanks so much for your reply and best wishes to you as well!