SHampton's thread

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Shampton0708

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Feb 20, 2016
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Reason
CALS
Diagnosis
10/2015
Country
US
State
Fl
City
Orlando
New CALS member so if I am asking the question in the wrong forum thread please let me know. My wife Cindy was diagnosed in Aug 2015. Having trouble breathing, swallowing and speaking but still mobile with weakness on her left side.

Went to Mayo Clinic Jacksonville and enrolled in a clinical trial (NCT02496767) for Tirasemtiv. She also takes Riluzole. We have been part of the trial since Jan 2016, not seeing much results IMHO. Cindy uses a Trilogy at night and that has helped alot. She went to have the feeding tube procedure done about 2 weeks ago. She has lost 60lbs since August. Hoping this will help her maintain her current weight.

One questions for CALS folks in the forum she is having trouble tolerating the "nutritional" formula (NestleHealthScience - Nutren 1.5). She get nausea, sweats and feels overall crappy for about an hour after doing one. She sits up, tried just a 1/2 a carton, has slowed the drip (using a gravity bag right now) and eats a piece of toast before trying one. She has run an INSURE thru it with no issues. Does she just need to get "used" to these supplements to build up to taking 3 cartons a day. Currently only able to do 1. Open to suggestions from others who are further down this journey
 
Especially if she was underfed prior to the tube it can take some time to get things back on track and some juggling. My sister was emaciated by the time she got her tube and had great difficulty at first. What worked : several formula changes to one that was supposed to be very easy to digest and gravity feeds did not work. She had very slow infusion by pump increasing a littleevery days alternating faster with more volume. Eventually she was able to tolerate feeds well and changed her formula to somethingcloser to real food.
Some people go right to blended foods in the tube too. Some people have serious issues from being in prolonged starvation mode. My sister was one, but she was able to overcome the issues and gain back some weight
 
I suggest just giving her the Ensure as her main food and an occasional Nutren to see how she tolerates it. If it is Nutren 2.0 it is higher calorie which can make it harder to digest and requires extra water intake. Try cutting the amount given with about 1/3 water. At this point getting food into her is more important than using a specific brand.

She might be more comfortable if she uses her Trilogy at mealtime and for a while after. It takes more breathing effort to get all the oxygen needed for digestion. And , of course, check with her doctor about trying a different brand if you can't get insurance to cover the Ensure.
 
Hi Shampton,
I'm glad this was moved into a whole thread for you so we can try and help better.

Nikki mentions starvation mode and it's very real.
The less a PALS is eating over a period of time, the more the digestive slows and the stomach shrinks. It's more the slowing I think personally that begins to seriously affect them as peg feeds start.

One thing that can help is to eat a few mouthfuls of something she can tolerate 5 -10 minutes before the peg feed. Digestion starts in the mouth (actually in the brain - smelling food and anticipating gets saliva started and the system activated). So getting the saliva going and the peristalsis started by some chewing and swallowing can assist.

It seems a lot of people find they don't tolerate some of the formulae well - could be the protein sources. So trying different brands may help find one that works.

Using real food - cooking a meal and blending it to the same kind of soup consistency of peg formula seem to help pretty much everyone who have these issues.

Going really slow helps too. This is where a pump is so useful as it's hard to spend hours of your day coming back to slowly give a bit more formula. The pump may just be a starting point and as she gets her digestion back you may be able to go back to gravity feeding. Or an overnight pump just may turn out to work terrific for you both.

I would ask that if she can eat toast, how dependant is she on the peg?
Maybe you could try just making a good high calorie smoothie and giving her 100ml of that 20 mins after a meal she has eaten to boost the calories?
 
The peg was recommended mostly for hydration and calorie supplementation to help put on weight. She can still eat a full meal and uses the nutritional supplement to add calorie. I do think Nikki is onto something with her being malnutritioned. So these rich supplements will take time to get used to. I like the toast suggestion. I also think Cindy was increasing volume too fast (I.e 1 carton a day to 2 cartons a day. I think she needs to increase volume more slowly maybe by 1/4 or 1/2 carton instead of a whole one.
 
You could also make her a small smoothie that is very thin. I would try something higher is protein. Muscle milk or the like might be worth a shot. For smoothies, try some fruit, a protein source like greek yogurt or whey powder and thin it with milk or juice. I gave these to my husband several times a day.Cindy could drink these between meals.

Also, are you using room temperature fluids for her feed? If they are too hot or cold they can cause cramping and discomfort.
 
My husband takes nothing by mouth, everything through the PEG tube. He uses an infusion pump at a slow rate which may help your wife. This can be run overnight as long as the head of the bed is elevated. If you try this and she still is symptomatic, I would try a different formula.

Sharon
 
Shampton you said she had no trouble with an ensure - can you just swap?
 
We have about 12 cases of Nestle Fibersource that we'd love to give away. if the docs would like to try that I'd be happy to send it to you.

jen
 
I will try the Muscle milk option an an alternative. Yes they instructed us to make sure these supplements were room temperature.
 
Yes we are trying different alternatives we know Ensure is ok but i think something like Muscle Milk which is higher in protein is a good option as well. I guess we will have to see if her insurance would cover a non-prescription brand like MM or Ensure. Not that it would matter.... I would pay full price if it helps put on the weight!!
 
Loverly let me buy a couple of those and have her try it to see if she can tolerate it. I will be back in touch. Thanks
 
You know what else, sometimes you have to go slow. I'm reminded that Kathy didn't want us to use the plunger with the syringe because getting the formula too fast made her feel queasy.

You can control the speed by pouring less (obviously) or lowering the top of the g-tube so there is a less direct path for the formula to go in.
 
I was not able to tolerate more than one serving per day of the standard formulas. You might also research Liquid Hope. It's a whole foods formula with no high fructose corn syrup. Contains sweet potatoes, broccoli, and other vegetables. If you aren't tolerating traditional formulas, your doc can write a scrip for the liquid hope and Medicare will pay for it.

Additionally, since she is still able to eat, you should consider purchasing a Vitamix or comparable blender so you can purée normal foods that will be easier for her to digest. You can make high calorie soups like creamy Maryland crab or lobster bisque which both have over 700 calories per serving. Anytime you can use "real" food over the formulas it is much better for her. If she gets to the point where even puréed foods become difficult, just thin out the puréed foods and put them in the tube.

Best of luck.

Vince
 
Hey Vince are you now putting real food through your tube?
 
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