Tuesday, June 26, 2012

Mom backs real blended food for tube-fed tot























By Jennifer Han

My twins Andrew and Eleanor were 28-week preemies. Andrew came home from the hospital with three stomach surgeries under his belt and significant brain damage. The brain damage caused cerebral palsy and epilepsy, which put him at risk of aspirating and made feeding difficult.

At 21 months he had a fourth surgery to place a G-tube to ensure he was getting nutrition safely and in hopes of boosting his calories.

Andrew, I was told, could no longer eat real food. Instead, his diet would be a formula that was described as nutritionally complete, but which I discovered is made up of 53 per cent corn syrup.

The G-tube solved the problem of getting formula into Andrew, but it exacerbated his reflux and vomiting. Andrew spit up every ounce, retched, lost weight, never slept and stopped smiling. Instead of producing stools, he had green diarrhea once or twice a week. He was on the brink of total dehydration and doctors suggested more surgery: a J-tube, nissen-fundoplication or GJ-tube, but with the caveat that they might not work.

Then, while scouring the Internet for stories about children with severe reflux, I came across something called the blenderized diet.

In this diet, vegetables, fruits, grains and meats are blended in a super high-speed blender until they become liquid, then fed through the g-tube.

Families out in the blogosphere said that real food had a calming effect on their children’s stomachs and as a result, stayed down.

I had no idea that real food was a possibility with a G-tube!

This diet – which was never presented to us as an option by our medical team – has given us our boy back.

The blenderized diet isn’t new or radical. Feeding tubes have been around for decades and patients were once fed mostly blenderized food. In the 1970s commercial formula was introduced; hospitals embraced the convenience and never looked back.

I told our doctor and nutritionist that before we did any more surgery, I was going to try the blenderized diet. They weren’t happy. They said they had never had a patient go this route and that formula was best. With some reluctance, our medical team agreed to a trial.

The first week of the diet, Andrew did not spit up once. By day four, he was completely off formula and having nice bowel movements one to three times a day. He went from taking multiple 10- to 15-minute catnaps a day to a single one-to-three hour nap. He started sleeping 10 to 11 hours straight through the night with no feedings.

At his weigh-in two weeks after the start of the diet, he had lost a few ounces. I was disappointed, but knew that as the body adjusts from a mostly-sugar diet to real food, this was common.

Ever since, Andrew’s been gaining weight!

He may spit up once a week or so but it’s usually if he’s overtired or constipated.

Now that Andrew’s body is responding in a healthy way to real food, it’s clear that formula didn’t agree with him. We are bewildered and beyond pleased at how amazingly fast, drastic and profound the change has been. Not only is the blenderized diet treating Andrew’s severe reflux but it’s made him happier and healthier and prevented further surgery.

We know this diet isn’t for all children with severe GI problems. However, I believe medical staff should present it as a treatment option along with standard surgeries.

While the blenderized diet is a foreign idea to most North American hospitals,
there are a few – like Children’s Hospital of Philadelphia and Cincinnati Children’s – that recommend it. In fact, in a 2010 study by Cincinnati Children’s Hospital, 75 to 100 per cent of 33 children with failed nissen fundoplications who trialed the blenderized diet showed an immediate reduction of 50 per cent or more in reflux and vomiting.

For Andrew and our family, the blenderized diet has been life-saving.

Before beginning any change in your child’s diet, run it by your medical team, as it’s important that you have a supportive doctor and dietician to guide you.

Blenderized diet resources

Homemade Blended Formula Handbook by Marsha Dunn Klein

Ainsley Rae blog: great practical tips from a mom

Blended Food Resource Group

Facebook group for the blenderized diet

Andrew’s first blenderized recipe

This one comes out to about 34 calories per ounce. His Elecare formula is 30 calories per ounce. In the other recipes I’ve come up with, ratios for protein/grains/oils/veggies/fruits stay the same. I just swap different foods each time. His blends tend to be between 30 to 40 calories per ounce.

3 cups of roast chicken 700 calories
1 cup orange juice 100 calories
1 cup soy milk 100 calories
2 slices of whole wheat bread 200 calories
1 cup blueberries 70 calories
1/2 cup broccoli 40 calories
1 cup spinach 60 calories
1 tablespoon of olive oil 120 calories
1/3 cup apple sauce 60 calories
1/2 cup peas 60 calories
1/2 banana 50 calories
1 container pureed pear 45 calories

Total Calories: 1645

Read about Andrew and Eleanor and the latest edition to the Han family at The Early Birdies.

6 comments:

Jennifer, I applaud you for switching to wholesome food for your son early in his life. We have blended our daughter's g-tube meals for 7 or 8 years now (I've lost count) and my only regret is that we didn't start when she was younger. The health benefits of wholesome, nutritious food have been amazing. Her excellent overall health and b.m.i. have converted any potential doubters on her medical team, although I have to say we have generally had excellent support all along.

Thank you for sharing the study out of Cinncinati's Children's Hospital. It must be starting to make it's way into the mainstream pediatric offices, because I was just referred as a resource to a young mom the other day after her child's doctor recommended looking into blending table foods at home.

I am so thrilled that the tide is turning as the medical professionals acknowledge what Grandma has known for decades...you gotta eat your veggies (and other good stuff)!

So cool to hear that that is what your daughter eats too!

It seems odd to me that such a high concentration of corn syrup in formula could be healthy?

Thanks for posting Rose Marie

I've been giving my son blenderized food for 4-5 years now. He's 8.5. I also wish I'd started earlier and applaud you for starting with a toddler.

I saw several local dieticians before I finally hired Jude Trautlein in Arizona. She came up with a balanced diet, based on how our family eats.

Now when I see a local dietician (or doctor) who strongly discouraged me from trying tube food they all rave about how healthy and robust my son looks. But they still aren't helping parents switch to tube food. I'm glad to hear its becoming more accepted in some areas.

Pamela

What a very interesting and informative article. These parents are wonderful. Their persistence paid off. It is great that they are sharing their personal experience and knowledge. Thank you for this article.

Today was the final straw. My daughter puked again this morning, ugh. I asked God to open my eyes and look for the answer and here is where it lead me.

My daughter also had a brain bleed when she was born leading to severe brain damage. She actually was able to eat orally up until 1 1/2 ago and we started her on a stirctly tub fed diet. She has not done well with the formula, always throwing up and scares me. When I go into her room in the morning and she has thrown up sometime during the night/morning, she cannot sit up or turn to throw up, she surely has to get some of it into her lungs. I have talked to several GI docs and they all say the same thing, do the Jtube. What it would be like to never feel the sensation of being full again, it makes me so sad. I have been thinking we should try a different formula but when I typed into google "non milk based formula for tube feeding" this was one of the sites that popped up and I am soooo glad it did. I can't wait to get going on this transformation (with the help of the doctors and other moms), I think my daughter will be so happy! Thank-you for posting this, it made my oh so sad day hopeful.

I am very happy to hear that your child is doing so well on a blenderized diet. justfoodblends.com makes real food meals for tube fed people.