A Case for Blenderized Diet, Food Sensitivity and Acid Reflux Disease Management
Disclaimer: The information shared here is my own personal story and is not intended to treat or cure any medical issues. Please, always check your doctor before starting any treatment on your own.
Acid Reflux Disease (GERD), food sensitivities, food allergies, eczema, and asthma, all have something in common: they seem to be taking over our children’s health. Out of all those mentioned, GERD deserves special attention because is more common than we think in children and adults. Its symptoms are often painful and can significantly affect a person’s quality of life. GERD is usually treatable and several methods are already in placed to treat GERD. Unfortunately, GERD is often misdiagnosed and if not treated in a timely manner, can result in serious consequences as the following story can testify (IFFGD, 2014).
If you are reading this post, chances are you have or know someone with food sensitivities, allergies, acid reflux disease or is on a special diet. If that is the case, welcome. You are in the right place. I hope our story encourages and gives you hope.
November 2007 should have been a month where my then, fourteen-month-old toddler, should have been eating food such as mashed potatoes, macaroni and cheese, chicken fingers, you know, all those typical toddler foods. However, I found myself blenderizing her special diet for the day so I can push it through the G- tube placed in her belly. You see, at around nine-month-of age, my baby girl was diagnosed with Infant Acid Reflux Disease, food sensitivities, eczema, and failure to thrive. As a result, a nasogastric tube (NG) (a tube that is inserted through your nose down to your stomach) was inserted temporarily through her nose so we can feed her this highly expensive and hypoallergenic formula in order to boost her weight. Because she repeatedly refused to eat any food by mouth, the temporary NG tube changed to a permanent PEG tube (a tube surgically placed in the stomach through the abdominal wall). This tube was better as it decreased the risk of aspiration (food going into the lungs rather than the stomach). And so, our journey begins.
A little be of a background. Baby girl was born two weeks early at thirty-seven weeks. She was small for her gestational age (five pounds, twelve ounces), but otherwise seemed healthy. While in the hospital, I noticed she tended to choke a lot when she nursed as well as being quite “fuzzy” after she ate and when we laid her down to nap. I thought maybe the flow of milk was a bit too fast for her tiny mouth. We dismissed the issue and were discharged two days later. Life seems typical, late night feedings, crying baby, etc. At around two-weeks of age, Baby girl was refusing to nurse on a regular basis. She broke out in eczema all over her body. She also had a stuffy nose, cried and spit up more than normal and just looked sick. I paid a visit to the pediatrician. She assessed her. Baby girl oxygen level was low. They gave her a breathing treatment and proceeded to swab her nose. She was diagnosed with RSV and we were sent to the ER for further observation. That was the beginning of endless doctors’ visits, treatments, tests and the likes.
Two months later, and fully recovered from RSV, baby girl continued to vomit. This time was not just spit up. It was projectile vomiting; several times a day. Concerned, I paid another visit to the pediatrician who put her on acid reflux medicine to protect her esophagus from the acid in the stomach. She also sent us to the hospital for a Modified Barium Swallow test to rule out any anatomical abnormalities as well as any swallowing issues. At this point, I broke down and cried. I was functioning on two to three hours of sleep a day and the mentioning of a test and medicine scared me to death. I said to myself, “she is just two- months-old.” However, I quickly put myself together and headed to the hospital for this test. The test checked out okay and we were sent home with acid reflux medicine and aspiration precautions.
After seven months (March, 2007) with little change in her projectile vomiting, eczema issues, sleep patterns or eating habits, I paid yet another visit to the pediatrician who gave us the bad news that she was failure to thrive, had food sensitivities and needed a feeding tube.
Fast-forward to May, 2007. After two months on NG tube feedings, we were referred to a pediatric surgeon for a placement of a permanent PEG tube for feedings. The surgeon ordered a 24hr pH test with impedance to assess the severity of baby girl’s acid reflux over a 24 hour period and to rule out the possibility of a fundoplication (a surgery that reinforces the lower esophagus muscle to prevent the acid from backing up and causing damage and pain). I was functioning on auto-pilot. The word surgery inflicted imaginary burns with blisters forming immediately. Fortunately, the surgeon was the more well-mannered and kind doctor I have ever spoken to. He took time to explain things. I was reassured and entrusted my baby to him.
The pH test was not as severe as suspected and only the PEG tube was placed (Thank God). They sent us home with instructions to come back in six weeks and changed the tube from a PEG to a G-button. This latter one we changed every 3 months or as needed. We were also referred to a pediatric GI specialist for an upper endoscopy to assess for any damage to her esophagus and treat accordingly.
Baby girl continued to get this special, hypoallergenic formula with little improvement in her eczema issues and projectile vomiting. She was on bolus feeds during the day and continuous feed at night. Amidst the mess, there was a light at the end of the tunnel. The feeding tube removed the worry I had about the failure to thrive issue and help me focus my remaining energy on researching all about Baby girl’s condition. While researching on the internet, I came across the groups Infant Reflex Disease and Blenderized Diet for kids on feeding tubes. I spent hours on these two groups. I finally found people who knew what we were going through. They helped me in ways they can only imagine. I decided to to hire a licensed dietitian and give a blenderized diet a try.
The dietitian put a menu together for Baby girl to include no wheat, corn, peas, dairy, nuts or any of the major allergens. Her blenderized diet included lots of organic vegetables, specialty organic cooked meat, organic fruits, enzymes, potent probiotics and supplements such as fish oil, zinc, magnesium, etc to make up for the vitamins she wasn’t getting with food. After three months on this blenderized diet pushed through her G-tube three to four times a day, the projectile vomiting decreased from four to five a day to two a day. After six months, there occurred maybe once in a while.
We had our first appointment with the pediatric GI doctor around March 2008. We told him what we have been doing. He was not on board all the way with the idea of a real food push through the tube. It was a new concept to him and none of his patients were doing things like we were. But I made my case and showed him the dietitian menu. He agreed to the diet for the time being and added it to her records. Two months later, the upper endoscopy (EGD) was performed. To my relief, there was no damaged found on her esophagus from all the vomiting, however her small intestines were inflamed. She was also having fouls-smelling stools. He ordered an empty scan ( a test to see how fast food moves out of the stomach into the small intestines). It showed extremely slow motility and she was put on reglan and erythromycin to help move food faster. Reglan caused severe neurological symptoms and so was quickly stopped. Erythromycin didn’t seem to help either and was also stopped. Under the GI doctor supervision, we started baby girl on Domperidone for motility and for a short while only. The difference was noticed when Baby girl started asking for food from us at the dinner table. On our next follow-up, the GI doctor suggested we continue with the blenderized diet since her blood work and weight indicated she was thriving. He also suggested we repeat the EGD in six months. Of course, that old super expensive hypoallergenic formula we were on was a thing of the past by this time.
I continued with the blendirized diet through the feeding tube, but added more potent probiotics, enzymes and supplements. The fouls-smelling stools got better and she continued to thrive. She weighted two times more than what we started with. Since she was finally doing well with her gut issues, I then turned my focus to getting her to eat more by mouth. She developed a food aversion after vomiting and hurting for so long due to her acid reflux issues. The regular pediatrician recommended speech therapy twice a week to help with that. I came to never, ever underestimate the work of a speech therapist. Their training, tools used and techniques helped my baby made significant progress towards wanting to eat food by mouth again.
After a-year- and-half on the blenderized diet, two years of feeding tube, a year of speech therapy, and at around three-years-of age, we decided it was time to transition baby girl to more oral feedings and less tube feedings. The speech therapist advised us we look into a feeding clinic. I researched several and finally picked one located in Charlottesville, Virginia after consulting with another mom whose child has gone through the intensive feeding program there with excellent results.
I called the next day and there was a waiting list to get into the two-weeks inpatient feeding program, but we asked to be placed on the cancellation list. A month later, we got a call that there was an opening. Sometime in November of 2009, we started the five-hundred mile car ride from South Carolina to Virginia. The first three days of therapy were the toughest. Baby girl barely ate those three days and my mother instinct wanted to take over and stop her hunger strike. The therapist understood my fears, and reassured me over and over that she got a team and they will intervene if they think is necessary. On the 4th day baby girl ate a full lunch. A week later she was eating about 50% of all her meals without tears. I cried and cried as I saw her eat like a normal child. We were sent home four days earlier. It was a success. Baby girl has been off tube feedings for ten days and hasn’t lost much weight and hasn’t become dehydrated either.
I got sent home with very specific instructions. Our transition at home was a bit rough for a few months, but I was told over and over not to give her tube feeds (unless she didn’t eat or drink on her own for a few days) or all our efforts would have been wasted. I had my doubts. But, I persevered. She lost a few ounces here and there, but she kept an acceptable weight. A year after starting oral feeding, she has managed to stay healthy. After the GI doctor cleared her, the decision was made to remove the G-tube. Baby girl was four years of age at the time. It was a day in history as I had little hope of ever getting that G-tube removed when it was first placed.
Today baby girl is nine-years-old. She is still small for her age, has a few food sensitivities such as peanuts and shell fish, and is a picky eater. However, you should see her eat pancakes, chicken fingers, and macaroni and cheese. Those are her favorites. She also loves ice cream and all kinds of sweets. All foods high in carbs and fat, but I don’t really care. She is in the fourth grade and thriving.
It is my hope you find the happy ending to our story and the resources listed below to help in your own journey. Finding support groups such as Infant Acid Reflux Disease and Blenderized Diet was the turning point for us. I made many virtual friends and to this day, we keep in touch. On the days where I could barely function, they were there to see me through. So, make sure to look at the websites. The administrators have put together many useful links and resources with information about acid reflux disease, doctors, diet information and more.
Leonarda Gaige, RN
Below are links and products I used while on our journey:
Acid Reflux Disease and Gastroperesis
International Foundation For Functional Gastrointestinal Disorders (IFFGD)
Gluten Free/Dairy Free Foods
Supplements and Enzymes
Probiotics (Potent ones)
Food allergies and Sensitivities