Follow up with peds dr...

We took Ellie in to see our favorite peds dr in this local area and filled him in on everything that has happened since her surgery and the results we have gotten back to this point. I even let him know that since we are STILL waiting for the Neocate to come in through the insurance I was able to get some cans of formula through a medical exchange group just for the cost of shipping to get her started earlier. He was really impressed (one box arrived today!!!!).

We talked about her sore throat and low energy issues. He thinks part of this is due to her healing process and part due NPO status. We need to increase the saline nasal sprays, and the saline neb treatments as this will increase moisture to nose and throat.

He really feels once we get her off the soy based formula and on the Neocate some of this will resolve. Unfortunately, due to her complex medical issues he said to expect the waves of energy and exhaustion to continue. He was  not surprised or worried that she has lost weight again especially with us just doing another bowel prep, and said that is most likely why her tummy feels so much better and the distension is almost all gone today.

The strep culture came back negative. She does have swollen glands again so he thinks something viral got her. I let him know my instructions by John Hopkins was to give the hydrocodone and mortin as soon as she complained of pain and motrin if we noticed fever. Then about 20 minutes after giving the meds realized I should have taken her temp before giving meds NOT just feeling and giving meds when I realized she felt hot.

We talked about her tummy issues and how I immediately took her off the formula, put her on pedialyte and started the bowel prep cleanse to reduce her stomach distension issues. I let him know that today she is staying on the pedialyte the rest of the day to let her body rest and finish recovering, then was going to try formula again tomorrow with the hopes of starting the new formula tomorrow. He wants me to start introducing the formula in small bolus amounts with the pedialyte and if she shows not reaction then the following day then move straight to Neocate. Get her off the soy because she is clearly continuing to react to it and he will help us work through any change over issues.

Her peds dr totally amazed on how much miralax her body needs to maintain normal bowel movements and how often we have to do bowel preps (and how much miralax we have to use) on her as if we were getting tests run just to clean her system out. she gets 3 cap fulls every morning. We have tried to separate the Miralax out throughout the day but if we do then she is not having any bowel movements during the day only while sleeping. If we give all in one dose then she has normal bowels during the day and none while sleeping.

He is puzzled by the fact that we start the bowel prep early in the morning and finish before noon and nothing happens until somewhere between 3-5am when she is sound asleep and her body is fully relaxed then suddenly everything slowly leaks out. Not an explosion or anything just a slow leak. She will totally overfill her goodnights pullup and flood her bed. The weirdest part is like her whole body has to be fully relaxed before this process can work.

I think that covers the important parts of the apt today...

Tube Feeding Diets? Really??

Yesterday while catching up on posts in Facebook I came across a rather disturbing article and story that ran on the Today Show on NBC making huge waves and not in a positive light among the feeding tube community. The article is Desperate Brides Try Feeding Tube Diet, (http://today.msnbc.msn.com/id/47061726/#.T42HoatDySo  ) there is also a video posted in yahoo titled The K-E Diet: Brides-to-Be Using Feeding Tubes to Rapidly Shed Pounds. (http://gma.yahoo.com/k-e-diet-brides-using-feeding-tubes-rapidly-080053646--abc-news-health.html )

This is nothing new. Fad diets have been around for years. Some of the most common and potentially dangerous fad diets that are very popular include the 3-day, Cabbage Soup Diet, HCG, Negative Calorie, Hollywood, and Grapefruit Diets. Now we have the feeding tube diet. The one thing all these (except the tapeworm diet) have in common is the restriction of calories. In a fad diet, the dieter is desperate and looks for the easiest way to shed pounds or the final extra pounds in the easiest way possible.

Some of the most common side effects of low-calorie diets include dehydration, muscle mass loss, kidney stones, headaches, and loss of energy, high cholesterol, constipation, bone fractures. When a high-energy person tries any of these diets and has no energy for running or even walking are they healthy?

Out of the diets listed, the most disturbing to me is the K-E Diet. Through this diet, women are losing the final 10-20 pounds before their wedding. In Florida a doctor is offering this diet for $1500. So while under the “supervision” of medical care, the NG-tube or nasogastric tube is placed through their nose into their stomach, while they are drinking through a straw. During the 10-day diet period they are feed at a rate of about 85ml’s/hour (according the video) continuously 24/7. This ketogeneic provides a daily 800-calorie count liquid nourishment lacking carbohydrates for 10 days. The body burns the fat through ketosis.

Now burning fat rapidly with minimal effort and liquid constantly going into the body to prevent dehydration may sound good. However, in reality this is not good at all. Why? Well they the body is going into starvation mode. Through the use of the ng-tube and the continuous feeds of a mere 800-calories a day she (the bride) could drop the dreaded 10 pounds of weight plaguing her body.

So why does this diet bother me so badly? Well regardless the diet plan, anytime one drops the level of calories regardless if you eat or drink the calories weight will come off. Of calories are reduced and exercise is added in then muscles will be toned at the same time. The “novelty” with this fad is having a tube shoved down your nose and into your stomach to draw attention to yourself. With this diet one can also say “oh no I am not sick, I have a down my nose because I am on a diet.”  “I am just dieting,” “or no my energy level is not normal right now because I am on a diet.”

Additionally, how can this diet be healthy when it forces the body into a state of ketosis, has no fiber, causes constipation, and causes the dieter to have really bad breath? Yes the before and after pictures may sell the diet.

So why would one really want to look into or follow a Ketogeneic diet? This diet has a real medial purpose. To find the real reason ask someone with a seizure disorder about seizures. Ask them what it is like to have seizures and how many different medications they have to take or have tried. How many of these meds have failed? What are the side effects?

There are many kinds of seizures all with differing effects. When the medications are unsuccessful with treating the seizures then the ketogeneic diet may be introduced while the child is in the hospital. NOT through a NG-tube mixed in a liquid while the child is home, at school, playing on the playground. Yes in the hospital under close medical supervision. This diet is very hard on BOTH the liver and kidneys. (funny how in the articles the liver was never mentioned). These seizure patients are closely watched to ensure they do not start showing signs of liver or kidney failure. See the list of side effects I mentioned earlier… Does this ketosis related diet really sound like a safe way lost those last few pounds just so one can “say yes to the dress?”

As a mother to two (YES TWO) children that both have had NG-tubes and then g-tubes I am repulsed by the fact that this doctor is allowing this “dieting” method. What has happened to the creed to help in all areas possible, to never cause or induce harm, to not encourage unhealthy practices?  How can he live with himself at night doing this all for the sake of vanity, the “perfect appearance” and his quick buck?

The day our son moved from his NG-tube to the PEG was a scary day for us. However when our daughter moved from an NG to a PEG we were relieved yet nervous, how would we manage 2 kids, a toddler and an infant both with feeding tubes. For our family these lifesaving medical devices have brought us sanity and hope. They have helped us to teach our nearly 8 year old son how to eat and at the age of 4 his feeding tube was pulled after 3 ½ years of use.

For our daughter, our family would not be blessed with her wonderful smiling personality without her feeding tube. To date she uses ONLY her feeding tube because she is unable to eat or drink foods. We are waiting on test results to determine if we can try to reintroduce some foods back into her life at 6 ½.

As a mother with 2 children with feeding tubes I “thought” I had seen it all and would not be bothered by this. However reading through some blogs I am very glad I did not see the actually story on this. I am one of those mothers who has had horrid comments about my young children with their feeding pumps running but crying because they were hungry and I could not feed them any faster because more food in their bodies would make them physically sick. I have had rude comments made to me about if I just took away all the tube feeds eventually they would be starving enough they would be forced to learn to eat.

I have had the stares because of two children sitting in a wagon with 2 backpacks hanging from an IV pole with their milk being pumped into their bodies. With our youngest it was not just her feeding pump, but also her oxygen, pulse-ox, apnea monitor. Both kids learned to walk with little backpacks with tubes. Our youngest now has one bag inside and often another bag outside for venting her stomach. She has tubes all over it seems. We still get the stares, funny looks, comments, sometimes nice, sometimes real questions, sometimes-rude questions.

So for me to read, “no I am not sick I have a feeding tube so I can diet” is repulsive to me. I have to watch my youngest child long for a time when she can start to trial foods ONE at a TIME again. Then we will pray she is fine with those foods and shows no food allergies.

When she does start eating foods if she does have an allergy will it be mild? Will the allergy be severe? Will her intestines back up on her this time placing her in the hospital for surgery?

When she starts eating again we will also be praying the laryngeal cleft repair that was done was successful. If not either they will have to redo the surgery, or she may never be allowed to eat foods again.

When we see the doctor next will her weight be the same, will it have dropped again, or will she have FINALLY gained a few ounces?

These are the things we parents of tube fed children worry about, not how do I get these last few pounds off. Do I look fat with these extra 10 pounds on my body? Or how “perfect” can I look for…?