Three years ago today...
There are certain dates in your life you will never forget. They are the major turning points in your life, the moments in time where things changed in some really significant way. September 7, 2009 is one of those dates for me. It was not the day I became a nurse. It was not my wedding day either. It was the day I took a leap of faith that literally changed our lives. It is the day we took our first step out of our feeding disorder hell, the day we ditched formula, and started my daughter on a blended diet.
Changing from formula to blended food may not sound all that momentous, but once you know how much it changed our lives for the better, you might understand why it is so significant to me.
Life On Formula: We were spending at least 6-8 hours a day pretty much force feeding my daughter. She had severe oral aversion, and was projectile vomiting 3-6 times everyday. She had very low volume tolerance, delayed gastric emptying, loose stools, reflux, and chronic gastritis (inflammation of the lining of the stomach). Her gastritis was uncontrolled even though she was on the maximum dosage of several medications. The inflammation was so severe, it caused 4 mild GI bleeds in the summer of 2009. My daughter existed solely on a diet of a few isolated highly allergenic proteins, corn syrup solids, safflower oil, and what amounts to a multivitamin, also known as canned commercial formula. My life had dissolved into a never ending and vicious cycle of pumping all the breast milk my body would produce, adding formula, force feeding my daughter, cleaning up vomit, then starting the cycle all over again. We weren't sleeping much because in order to get enough calories in her, she had to be fed late into the night. My daughter's weight was on track, but we were killing ourselves to do it. We weren't supported by her doctors. I repeatedly said I thought the formula was causing her vomiting. They disagreed. The only solution they suggested was to do a Nissen surgery and place a feeding tube. When we refused to do the surgery, they tried to coerce us into it, by saying they wouldn't write anymore prescriptions for her if I continued to refuse. (I fired them from the case instead.) After two and a half years of stuggling to feed our daughter, we were exhausted and miserable. Not to mention, it was horrible watching our daughter suffer like that day in and day out.
Life Off Formula: My daughter no longer has low volume tolerance, loose stools, reflux, vomiting, gastritis, or GI bleeds. Now that she is not being fed formula, which was literally making her sick, her oral aversion is gone. Instead of pushing away her bottle, she asks for her bottle and is eager to eat. She can easily and independently feed herself. She is able to happily and comfortably meet her calorie and nutritional needs. An elimination diet proved she was intolerant to, among other things, dairy, corn, and sulfates, all of which are found in almost all commercial formulas. She takes a full blended diet in a bottle with a modified nipple. I cut the nipple hole bigger to accomodate the thickness of the blends. Instead of artificial garbage, she gets a wonderfully healthy diet full of fruits, vegetables, nuts, lean meats, and good fats. She eats better than any other child I know. Blended diet has made her healthier and much happier. She may always need a blended diet due to her brain bleed, and other medical issues, but she doesn't have to be trapped on formula ever again. Blended diet freed us from our feeding disorder hell. Because I know there are other kids, and other parents out there suffering in much the same way as we did, I am passsionate about sharing our journey with the world. Who knows, blended diet may just be the answer they are looking for as well.
You can read more about our feeding disorder journey here:
|Blended diet has greatly improved my daughter's quality |
of life. Seeing the difference blended diet can make first hand is
why I am so passionate about letting others know this it an option.
The rest of this post consists of more detailed information for anyone considering starting a blended diet:
Before starting my daughter on blended diet, we had occasionally tried adding baby foods to her formula, but there were never any improvements in her symptoms until we completely eliminated formula. Some people just don't get better until all formula is eliminated.
Once we dropped formula and started her on full blended diet, some improvements were almost immediate, and some occurred over a few weeks. It is important to understand it can take as long as one month for the GI tract to fully heal, so give it some time.
When my daughter was on formula, she could only drink one or two ounces of formula at a time. The first time blended diet was mentioned to me, I thought if I added fruits & vegetables, the calorie content of the blend would be so low, that there would be no way I could meet my daughter's calorie, and nutrition needs. Once I started blended diet, I quickly learned two things: First, food choices can drastically affect the calorie content your blends. You can easily make a blend that is 30 calories an ounce, which is what many formulas contain. Secondly, volume tolerance (how much volume one can tolerate for a meal) may go up if you can eliminate formula, which makes it much easier for you to meet your calorie/nutritional goals. My daughter polished off 4 ounces of blend (double her personal best on formula) with her first bottle of blended diet. Her volume tolerance continued to increase over time.
Switching to blended diet, eliminating formula, and the foods to which she is intolerant solved the majority of my daughter's feeding issues. We had tried many formulas, even the elemental ones like Elecare, and partially elemental ones like Peptamen Jr.& Vital Jr. None of them worked for us. My daughter is orally fed. She drank her first ounce of Elecare, and promptly went on a hunger strike, refusing to eat anything else for 24 hours. Although she couldn't really "talk" her response to Elecare was clear. She said, "No thanks. I'd rather die." I figured out much later, that she can't tolerate corn syrup solids, which is the main source of carbohydrates in nearly all formulas. By the way, Elecare is 53% corn syrup solids. Almost all commerical formulas are about 50% corn syrup solids. (Yuck!)
Despite the fact that many doctors either don't know, or won't admit it, many people can't tolerate formula, and will have bowel issues, oral aversion, reflux, vomiting, low volume tolerance, gastritis, skin problems, or some combination there of, as long as they are on any formula. It is not unheard of for someone to be unable to tolerate any formula, even the prescription elemental ones. It happens. I know several people like that. Dropping formula, sometimes has the added benefit of creating more interest in food orally. That interest can go a long way in helping resolve feeding issues.
Most people in the medical community are behind the curve on blended diet. It may seem like it, but feeding blended food through a G tube is not a new idea. It is what everyone with G tubes did before the invention of commercial formula. Once commerical formula was available, people were sold on the idea that it is as good as real food, sort of like they were sold on the idea that baby formula was as good for babies as breast milk. Now we all know better.
Try to keep in mind the G tube is just another route to the stomach. It doesn't, in any way, change what is needed once you get there. Think of the blender as doing the chewing, and the G tube as doing the swallowing. It really can be that simple. We should stop thinking of G tube feeding as a medical procedure, and realize it is just an alternative way of eating. I think in the years to come, the medical community will come around to the idea of blended diet, but in the meantime, it is up to us to educate them.
I wish I could tell you what to expect from the medical people in your life, but the responses to blended diet vary widely. In case they are not supportive, let me arm you with the following:
-The GI tract is not a sterile environment. Your blends do not have to be sterile. The food typical people eat is not sterile. Using the same safe food handling procedures everyone uses is all that is required.
-We are talking about giving food not poison, act accordingly.
-Our bodies were designed by God, (or evolved over millions of years, if you prefer to think of it that way) to digest food, not formula. In either case, how arrogant is it to think we know more about what the body needs than God, or nature? Our bodies are meant to digest a wide variety of foods, not the same corn syrup laden milk protein all day, everyday.
-If you brought a typical child to the doctor, and said all he eats is a few cans of Pedisure a day, that would not be considered acceptable, so why is it okay for those who use G tubes to live on formula alone?
-There is just no substitute for the micro nutrients in real foods. Everyday we are learning more about the health benefits of certain foods, especially fruits and vegetables. Using formula alone, you are unfairly missing out on these benefits. Don't G tube fed people deserve real food too?
-If formula is really perfect nutrition, and better for you than real food, why isn't the doctor living on it himself?
-You have tried their way & for many of you, formula is not working.
Here are some tips on getting started:
If the person being fed is able to communicate, consider allowing them to participate in the chosing of what foods to blend, it will help them feel more involved.
It helps if you can ask a dietitian to pretend you don't need a G tube & give you a list of what he/she would consider to be an acceptable diet, then work that diet into your blends.
If you are currently dealing with GI, or bowel issues on formula, I strongly suggest you insist on avoiding all the common food allergens in your blends, at least for a while. Skip wheat (gluten), dairy (whey or casine), soy, corn (or corn derivatives including corn syrup & corn starch, maltodextrin etc.), peanuts, tree nuts, fish, shell fish, and eggs. You absolutely can make a nutritionally balanced blend without any of those things. I have been doing it for years.
Why avoid allergens at first? If you start your blends with milk for instance, and you have an unknown milk allergy/intolerance, you may develop negative symptoms, and won't be able to tell if they are from the milk or blended diet.
If the GI symptoms go away you will know they were caused by something in the diet. Then you can add all the most common food allergens back into the diet very slowly, one at a time. Doing so allows you to identify any problem foods. It may take a while to work your way up to a good variety of foods, but it is well worth the effort. As we saw with my daughter, eliminating problem foods can really improve ones quality of life.
If you are dealing with reflux, vomiting, low volume tolerance, delayed gastric emptying or bowel issues, formula could be the cause. Unfortuneately, doctors often prescribe medicines to deal with these symptoms, rather than looking for the root cause. I believe they should be considering a change in diet as the first step. Blended diet often greatly improves, or resolves these issues.
My friend Eric, (a G tube user himself), told me formula feels like a brick just sitting in your stomach, and that blended real food just feels better.
Obviously, not everyone has trouble on formula, and I do admit to a personal bias against it, but please don't feel like I am making any judgment on you, if you chose to continue using formula. Only you can decided what works best for you. I have come to hate the stuff myself, because it has caused so much unnecessary suffering for my daughter, and many other people I know. Like many of the parents I have worked with, I only wish I known about blended diet sooner! I have seen first hand how much better things often get when formula is totally eliminated. Having said that, if you are not having issues on formula, by all means, feel free to use it.
If you are worried about how well real food will be tolerated, let me say, I personally would be more worried about the formula, than real food.
When first starting out, any foods that were tolerated well in the past, are fair game for adding to your blends. The limiting factor would be your blender. If you are using a typical blender, you will probably need to pre-cook things, blend, then run your blend through a sieve to catch the occasional lumps left by the blender, or you could use baby foods in making your blends instead.
Once you decide blended diet is for you, if you can manage it financially, you would be much better off using a Vita Mix or Blend Tec Blender. If you are in the US, the Vita Mix company will give you a nice discount, if you provide them with a letter of medical need from your doctor, or speech therapist. (Outside of the US policies vary, so start your inquiry by visiting their website, www.vitamix.com
To get the discount in the US, you can contact:
Customer Service Manager Vita-Mix Corporation
8615 Usher Rd.
Cleveland, OH 44138
1-800-848-2649 ext 2501
When I purchased mine, in Sept of 2009, it cost about $320.00 with shipping. I think the price varies a bit, depending on where you live. In my opinion, the Vita Mix is worth its weight in gold. It eliminates the need to strain blends, and means you can blend nearly anything. Their customer service is amazing. Once we damaged a part, and even though I told them it was totally our fault, they replaced the part free of charge, and expedited the shipping because they knew I use the blender to make blends to feed my daughter. They take great care of blended diet users. In case you are wondering, I do not have any affiliation with the Vita Mix company, other than I happily own and use one. :)
Some people have had success getting their insurance company to reimburse the cost of a blender used for preparing tube feeds, so that is worth a try. You have nothing to lose in asking. Some people have used their health savings accounts, or flexible spending accounts to pay for them too.
All that being said, you can make a nutritionally sound blend with a regular blender. It can be done. It is just a bit more work, and blended diet sometimes wears out the motor of a typical blender kind of quickly. I wore out a Magic Bullet in less than a month.
If you go to http://www.choosemyplate.gov/myplate/index.aspx
you can get a run down of what your daily goals are for each food group. You plug in your choices for each food group and go.
There are many good online resources for figuring out the calorie and nutritional content of your foods. http://nutritiondata.self.com/
is one I like to use, but there are others.
A full blended diet may seem overwhelming to take on. Do it at your own pace. Some people tip toe in. Some people dive in. Do what you are most comfortable with. There is no right or wrong way to do blended diet, just your way, which you will develop over time.
If you make two days worth of blends at a time, it is less of a hassle. We do fine storing it in the refrigerator for up to 3 days. You could also make them up for the whole week, and freeze some of it, so none sits in the refrigerator for more than three days. Frozen blends will most likely thaw out with a grainy consistency, which does not hurt the blend. Just thaw it out, at least part way, then pop it back into the blender, it will smooth right back out. Freeze blends lying flat in a zip lock bag. Use the ones labled as a freezer bags, the regular ones often leak.
The time it takes to make your blends will go down, as you get more used to doing it.
If you are interested in learning more about blended diet here are a few valuable resources:
Facebook group Blenderized Food for Tubies:
I am one of the administrators of this group..
Blenderized Diet Forum:
Blended Food Resource Group:
Here is some good blended diet information for beginners:
There is a book available online "Complete Tubefeeding" which covers both G tubes, and blended diet:
There is also a Blenderized Diet Group on Yahoo:
Well, I have given you a bit to "chew" on (pun intended). I hope you find some of it helpful. With the things I recommend, as with all things in life, take what you find useful, & forget the rest.
I wish you stamina for your journey.
Kristina Blizzard RN, BSN
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