More about the upcoming FDA meeting, and a recipe!

This is a partial repost from my last post (which I removed, due to some confusion by those who read the earlier version).

Everyone requires at least a certain level of having a sense of being in control of events in their life.

Whether it’s taking a trip and traveling geographically, or that journey we take as we navigate through our daily lives, most of us want the ability to make choices as to what is important to our  happiness and health.

How our health care is managed is definitely area where we want to have a say.  For the most part, I believe the majority  of us want to be involved, and to have real choices made available to us.

Most of us did not expect to have a feeding tube.  We lived our lives oblivious  to the concept that there are people who lived everyday “normal” lives too, but that these people were living their life with a feeding tube as a meal delivery system.

And we got that tube, we were not empowered with a sense of being in control.  Some make it a priority to try to gain control, but for the most part, we have not had a support system in place that was interested in knowing what was important to us, nor have there been product design teams ready to develop things that were what we wanted, in order to make life easier and safer for us.

The FDA (the United States Food and Drug Administration) has said that they recognize that this should be more of a priority.  They have been holding focus group meetings on the subject of tube feeding in a home setting.

I am excited to have the opportunity to be a part of an upcoming meeting. This “collaborative conversation” is sponsored by the  Oley, and the Feeding Tube Awareness Foundations.

When I first spoke with Joan Bishop, who is the Executive Director of the Oley Foundation, she explained that the FDA  was looking for tube fed individuals who lived at home (as opposed to someone who was cared for in an institution) who would be willing to demonstrate the methods they use, during a small focus group meeting at the FDA headquarters near Washington, DC.   She wanted to know more about my situation, and whether I used a pump, (no) if I utilized a blenderized diet (yes).

The meeting, which is May 22, is not open to the public.

I attended an online orientation meeting this past Monday  in preparation for next week. The staff of the FDA who participated in the orientation presentation stressed that they want to know more of what life is like from the tube fed person’s perspective.

One of the speakers during this “pre-meeting” clarified what the FDA does,  and does not oversee/regulate.  Another FDA speaker noted that until very recently, historically  they have had very little feedback from consumers/patients about the methods and equipment which are utilized for the tube feeding.  But, since the past couple of years,  there has been an increase (by a lot!)  of letters and other forms of communications from the tube feeding community.

They want to know more  about  what challenges we  face, and what a day in the life is actually like, as it pertains to being tube fed.  One of the specific aspects they want to better understand, is how we accomplish using a blenderized diet instead of formula.

A few tube fed adults and children will be demonstrating their methods of how they tube feed.  There is at least one person who has a J tube, instead of a G tube (which is what I have).  One participant is providing a video of preparing blenderized food for a tube feeding.

I asked if the FDA would like to see an actual demonstration of how a person blends a meal that will be used for tube feeding, and they very much are.   They were actually quite enthusiastic about it.

So, I will be bringing my Blendtec blender (and using Ernie Dog’s stroller to transport it lol)  and a pre-measured not yet blended meal to this meeting next week.  They have asked if I can also provide the recipe for it.   I’ve just finished up calculating the nutritional information of a regular family style meal that blends well.

I’ll make sure to write a follow-up post to this one after the meeting next week.

In the meanwhile, if you like Chicken Parmesan. here is a low carb version that blends up like a dream. Other foods round out this meal, but the chicken is the main entrée 🙂

Chicken Parmesan

Serves 8

One serving = approximately 257 calories 16 g fat (saturated fat 5 g, monounsaturated fat 3 g. polyunsaturated fat 1 g, trans fat 0) 22 g protein, total carb 5 g (dietary fiber 1 g, sugars 2 g)

INGREDIENTS:

1 Jar/20 fluid ounces IL Mulino brand marinara sauce

1 cup (30g), Shredded Mozzarella Cheese

12 Tablespoons grated Parmesan Cheese

16 0z raw chicken breasts trimmed and pounded to a 1/ 2-inch thickness

1/3 cup Almond Meal

Salt and pepper to taste

2 Tablespoons olive oil to saute chicken in.

DIRECTIONS Preheat oven to 350 °.

Season flattened chicken breasts with salt and pepper. In a shallow bowl, spread out almond meal mixed with 1/3 of parmesan cheese.. Dredge the chicken breasts in the almond meal mixture to coat.

Heat olive oil on medium high heat in a sauté pan until it shimmers from being very hot, but being careful not to let the oil start smoking. Cook the coated chicken breasts for 6– 7 minutes per side. Transfer chicken to a casserole pan.

Sprinkle half of the mozzarella on the chicken breasts. Pour sauce over the chicken/ mozzarella, covering it completely.

Sprinkle remaining parmesan cheese over the chicken and sauce, and then top with the rest of the mozzarella.

Bake in oven for 12-20 minutes or until cheese is melted, slightly browned and bubbly

To serve for a blenderized meal, take 1/6 from casserole dish, cutting the chicken into a few smaller pieces, and put it all into the jar of a high speed blender.

Add some water or chicken broth, other meal ingredients (see below) and process thoroughly.

Other foods included in this meal are:

6 ounces unsweetened applesauce ( 75 k cal, 19 g carb, 3 g dietary fiber)

1/2 cup (78 g) steamed broccoli (31 kcal, 2.5 g fiber, 6 g carb, 3 g protein)

Approximate Total value of meal: 363Kcal, 16 g fat, 25g protein, 3o g carb, 6.5 fiber

Approximate total volume = 20 ounces

***

This blenderized meal information has already provided to the staff members  who will attend the meeting on Monday.  I also included the ingredients in the  formula originally prescribed for me, for comparison’s sake.

 

OSMOLITE 1.5 INGREDIENTS: Water, Corn Maltodextrin, Sodium & Calcium Caseinates, High Oleic Safflower Oil, Canola Oil, Soy Protein Isolate, Medium-Chain Triglycerides, Magnesium Chloride, Potassium Citrate, Calcium Phosphate, Sodium Citrate, Soy Lecithin, Choline Chloride, Ascorbic Acid, Taurine, L-Carnitine, Carrageenan, Zinc Sulfate, dl-Alpha-Tocopheryl Acetate, Ferrous Sulfate, Niacinamide, Calcium1oride, Riboflavin, Vitamin A Palmitate, Beta-Carotene, Folic Acid, Biotin, Chromium Chloride, Sodium Molybdate, Potassium Iodide, Sodium Selenate, Phylloquinone, Cyanocobalamin, and Vitamin D3.

Osmolite 1.5 

Serving Size: 8 fl oz (237 mL)

Nutrient Data
Protein 14.9 g
Fat g: 11.6 g
Carbohydrate 48.2g
Calories: 355

 

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