Peg Feeding Tube

[Sharks1967]

Thanks for all the encouragement guys and yes Elaine they do have a chocolate one!
Cheers guys, Danny

 

[panguinjen]

Great news Danny!
Rog uses a mixture of iso source and glu cerna. He manages his own which is nice!
Keep us posted!

Jen

 

[KrisS]

It's awesome you are doing so well. You will be an expert at the feeding tube in no time. It is much easier once you get to 3 feeds a day. You sound like such a caring husband/father. Take good care. Kris

 

[mysisterskeeper]

glad u opted for the tube. Bulbar ALS is so quick, but you have so much movement for so long. With my sister her ALS has been around for 12 years, but only recently has the breathing been really bad like maybe a couple years. She uses osmolyte 1.5 and is suppose to get 4 or 5 cans a day but rarely does. Do you put the sugar and oil directly into the formula when u put it in the tube? She is on a continuous feed with a pump but I can use a syringe if I need to. I know she isn't getting enough calories. I mentioned that you can puree regular food and put it in the peg but she doesn't believe me. She is so with it that sometimes it works against her. Since she is immobile she scavenges for bits of control and fights suggestions unnecessarily.

 

[momap53]

Ah...control. We try so hard to control some things because we've lost control of so much.

 

[Sharks1967]

I'm not adding sugar or oil to my feeds at this stage, just the straight bottles. I'm just gravity feeding via the syringe with no plunger and it runs in pretty well. Does anyone know if the "homemade" foods will gravity feed or will I need to plunger them in? I suppose it while depend on the consistency of the blend but what do you guys do? I've lost a lot of strength and control in my left hand and right is starting to go so having to use the plunger may take the independence of feeding myself away. I'm the type of person that fights to maintain every little bit of independence and not give an inch when it comes to MND.

 

[Sharks1967]

Hi all,
Just an update on my feeding tube.
Well within about 5 days from having the peg I got up to the full amount of Fortisip food the dietitian recommended and very soon got back to only 3 feeds a day instead of 6. Started with a couple of blended homemade foods I got from Lucy's Homemade food site, the chicken was great! Also kept having my homemade custard most nights. I'd weighed myself the Monday I started on full feeds and again the following Monday and much to my surprise I'd actually lost weight. I'd averaged 2750 calories a day and almost 2 liters of water so I was very disappointed. This week I've up'd calories to around 3000 a day and including at least 2 mouth feeds a day along with a 7th bottle of Fortisip before bed with my Meds. The Fortisip are 300 calories per bottle. Next weigh in is Monday so fingers crossed for some gains. What are others experiences with peg feeding and weight gain? I was very disappointed with my first weigh in to say the least and to tell the truth it got me down for a few days. Feeling a bit better with this weeks effort.
Danny

 

[Amy Perdomo]

my mom just got the peg tube and i am giving her 3 cans of jevity 1.5 a day...and she is kind of constipated, can i just crush some laxative medicine and give it to her thru the tube ?
she is not able to talk and sometimes she looks at me as though asking me for food, i got her a writing board but she is unable to do that too because she writes words that dont make any sense...or she writes the same sentence over and over again....has anyone had this issue ? its soo frustrating to see her like this, and have no communication with me....she rubs her arms and legs alot....i ask if they hurt her and she nods "no", but i dont know what she is feeling or what she is trying to tell me.
I HATE ALS !

 

[KrisS]

Hi Danny, I'm glad you are doing so well with the feedings. You are on the right track and I hope you show a gain this week. If there is no gain yet, talk to your nutritionist, they will be able to help direct you as to what else you can do. Good luck!

Amy - We were told to use MiraLax and it does work very well for my husband. Have you shared the communication problems with her Dr.? It sounds like she may have FTD along with the ALS. Check the thread ALS/FTD. The things you describe sound very familiar to me. I HATE ALS TOO! I also HATE FTD! It all stinks.

 

[brooksea]

Amy, hon, do you not have any help? How old are you? She may have some slight FTD, if her words don't make sense. Have you contacted your local ALS Assoc? They may have a loaner device that she can use to communicate. If they don't, you need to contact the ALS Clinic to get her evaluated for a speech device and FTD.

As for rubbing the arms and legs, she may be itchy. That is a common problem with pALS. You may want to try to scratch where she is rubbing to see if it helps. If so, it will take trial and error to calm the aggravating itching problem. She may need an anti-anxiety med to calm it down or a simple cream/lotion.

 

[Sharks1967]

Amy, just make sure the laxative is NOT a time release tablet. I used a liquid a couple of times a week mixed with a little water in the tube but I'm working my way off it as the Fortisip has added fibre in it.
Danny

 

[mysisterskeeper]

For constipation we use senna 3 teaspoons twice a day, milk of mag as needed and bisacodyl suppositories. It softens the stool so it isn't so large. With the als there is no ability to push or bare down to get the stool out so it just moves along the boel tract. Sometimes my sis will sit on the bedside comode for almost an hour waiting

 

[notme]

Hey

Women need between 1200-1500 calories at 5'2" just to 'exist'. I'd imagine a man would need a lot more than that. And, with ALS, I'd think you're expending a lot more energy doing things for yourself. I'd doubt 2500-300 calories a day are honestly enough for you to maintain your weight.

I'm so happy your surgery went well!