Eat Happy!

Eat Happy!


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Wednesday, April 16, 2014

Don't Try So Hard

It’s been ten days since our visit with the motility doctor in Philadelphia. Things are finally settling enough in our new routine that I can get this post together, to share our new knowledge. In quick summation, our new plan is to keep things moving the way they are right now. That is to say, we will continue providing Ian five-six eating opportunities a day.


Ian has been gaining weight since the testing was done (Upper GI and gastric emptying scan) in February. His feeding clinic has some different growth data than the GI. According to the feeding clinic, Ian is in the 50th percentile for weight (34 pounds 13 ounces) and the 14th percentile for height (linear growth) based on the CDC growth charts. The 14th percentile for height places him just below in the “genetic approximation” pocket.

As strange as this could sound, these measurements place Ian in the 81st percentile weight for height, which gives him a BMI of 16.4.

The GI doctor has Ian placed in the 50th percentile for weight, but in the 25th percentile for height. This only places him in the 75-90th percentile for BMI. While this is high, it keeps him in the “normal” weight BMI classification.


Anyhow, the key variable we are trying to control is retching and vomiting. But, because he is doing well with his linear growth (height for age) and is gaining weight, many treatment options are contraindicated. Ian does not *qualify* to have any Botox to relax the pylorus (valve that empties the stomach), J or GJ tubes, or surgeries (to repair the small hernia in his fundoplication). Our motility doctor has discussed domperidone with Boston Children’s Hospital. At this point in time, Boston is not accepting new patients for the domperidone clinical trials. They have recently discovered that children of Ian’s age were not seeing enough benefits across the board to warrant using the medication. They are not currently adding patients of Ian’s age to their protocol. This eliminated a large treatment option for Ian. However, since he is doing well with his growth, it seems silly to slap another medication onto the pile. Which leads me to our next step.....



The idea behind our next *phase* is to back off and give Ian some independence. The thought is to decrease Ian’s vomiting by giving him more freedom to decide when and when not to eat, instead of adding a therapy/medication to keep things going the way they are now (us controlling when and how he eats). 


The overall plan for now is to begin backing off. We have discussed it with his feeding therapist, dietitian, and behavioral psychologist. The thought is to allow Ian to stop Ian when he signals he has reached his limits. Ian will need to learn these limits first. It is going to take some time for him to learn where his boundaries fall. We will need to make sure while he is learning that he is not using them as an excuse to “skip out” on eating.

As far as treatment options, there is the possibility of new medications. Ian would need to wean off a few of his current meds because they would cancel one another out. Our motility doctor feels that Ian may be using some medications that really aren’t doing a whole lot for him. He would like to wean Ian off of these meds. This made us a bit nervous at first, because it seems that meds are one of the things that have kept him so stable. But, I have to admit that the idea of kicking a few meds is music to my ears.

The new medication possibility would be an anti-spasmotic drug. This medication would help relax the pylorus (pyloric valve) and allow the stomach to empty. It seems backwards to relax the stomach in order for it to empty properly. The theory is that Ian’s stomach may be contracting erratically and inefficiently. The anti-spasmotic drug (ie: Levsin) would allow his stomach contractions to diminish, in the hopes that it would be able to work more efficiently.

We discussed with him the four pathological conditions of the stomach. I am going to create a blog post about these four aspects of motility so I can go into more detail.

1) Emptying
2) Accommodation
3) Pylorospasm
4) Sensory

Ian is currently taken multiple medications to help with his GI conditions:

Benadryl- This helps suppress the vagus nerve and emetic reflex in the brain (vomiting reflex). This medication helps Ian keep his mucus to a minimum, since it is an antihistamine. But, it also helps decrease mucus during times of retching. The vagus nerve produces mucus when retching and vomiting ensue as a way to protect the nerve from harm.

Periactin- This also helps suppress mucus in the same ways as Benadryl, but also helps from a sensory standpoint. As mentioned above, the Periactin has a side effect of appetite stimulation. There is no way of objectively measuring this effect. the medication also targets sensory nerves in the stomach, hence the appetite stimulation.

Erythromycin- This antibiotic, used in low levels, helps increase the strength of stomach contractions. The theory is that this increase will help the stomach empty more efficiently.

Bethanechol- This medication helps decrease nausea and vomiting through increasing the strength of the lower esophageal sphincter (the muscle that closes the esophagus from the stomach, inhibiting reflux). There is some theory that by doing this, the food is pushed through the stomach faster.

Neurontin- Ian’s sensory digestive issues are managed by Neurontin. Visceral Hyperalgesia is best explained in simple terms as “fibromyalgia for the organs.” This medication allows Ian to experience slight bloating, stomach contractions, and digestive functions of his intestines without pain.

Prevacid- Ian is still on a high dose of Prevacid to help minimize acid in the stomach as best as possible. With the vomiting still occurring approximately three times a week, there is concern for his already damaged esophagus.

Fruit-Eze- We have also been very happy to discover this natural intestinal health agent. It is a natural mixture of dates-raisins-prunes that helps keep the bowels comfortable and regular. Two teaspoons a day, mixed in applesauce, allows us to keep Ian off Miralax and other agents. With the visceral hyperalgesia happening, it helps to have a little added comfort. We buy this on the internet.

Alvesco Inhaler- While not a GI medication, Ian’s pulmonologist feels very strongly that while treating his respiratory conditions, the medication will also slip down his esophagus a bit. By naturally passing some of the Alvesco down the esophagus, it will decrease some inflammation there. This again is not a medication that will directly help his GI issues, but may indirectly help since it is already being used.

MEDICATION REMOVAL PLAN: (**-medication changes)

Now that we have started switching control over to Ian, we will begin to slowly remove some medications.

** After the first week, we removed the am bethanechol dose.

** All went well, so we removed the pm dose. So far, no troubles seem to be linked directly to removing the bethanechol.

** If nothing seems to “act up,” we will remove the lunchtime dose of Neurontin (3Xs day medication).

** The following week, remove the lunchtime erythromycin dose.

If all this is successful, Ian will officially be able to go a 8-1 school day without medication.

**We moved his Periactin/Benadryl cycle to 8s and 2s. We had been doing 10s and 4s. Ian received Periactin on 3Xs day on weekdays only. He receives the Benadryl once a day during the week. on the weekends, Ian receives four doses of Benadryl, and no Periactin. The Periactin has a higher chance of tachyphylaxis, or tolerance.

**After all the removal steps listed above, we will switch his Benadryl to Zyrtec. His GI doctor would like to use that to help control mucus instead of Benadryl. He feels that the Benadryl may actually be suppressing his appetite. This is a side effect of Benadryl.

The GI doctor expressed that the Neurontin and bethanechol are the ideal medications to remove before we could consider removing the G-tube. I’m not sure why these two, but he seem to think they would be the first to go. We have not used Ian’s tube for nutrition since May of 2013. he has not had any medications through the tube since November 2013 and no water boluses since December 2013. We stopped venting him the beginning of April this year, after uneventful vents for two months. These are all big steps toward taking out the tube.


While no definitive theory can be solidified on why this whole GI motility condition is happening, it seems to be a combo effect. Ian was born at 29 weeks. Apparently, the digestive system is one of the last to form in utero. Since Ian’s birth was unnatural, (meaning it wasn’t from my going into labor) his little body set no time aside as hormones would have triggered, to develop his GI system. In this sense, his body was unprepared to accept food, process it, and excrete it efficiently. He experienced little to no trouble in the NICU because he was not consuming a large enough quantity for it to cause issues. Once he arrived home, he started having problems.

NICU NG feeding tube

NICU bottle with mommy

First reflux trip to the pediatrician
Another key player in this pathological state is the probable vagus nerve damage from his fundoplication..... both of them. When the fundoplication takes place, the fundus (top part of the stomach), is wrapped around the base of the esophagus and stitched together. The vagus nerve is a large cranial nerve that runs from the brain through the body an down into the intestines. It regulates things like the heart and sensory components of the organs. The vagus nerve runs right through the area of the fundoplication. Because of it’s location, it has a high risk of damage. Damage can be partial, or more severe. Ian’s is considered to be partial, or minimal. Minimal damage to neurological anatomy can cause large side effects. It is thought that Ian’s dysmotility of the stomach, overproduction of mucus, and stomach-intestinal discomfort stems from some vagus nerve damage.

Vagus nerve innervations

Ian’s small esophageal hernia is thought to be of no importance right now. The fundoplication is still int act and functioning properly. Ian is not complaining of chest pain, or showing signs of swallowing disfunction or discomfort. Since he has had two esophageal surgeries, and has probable vagus nerve damage, they are by no means jumping to go in a third time. Surgeries create scar tissue, making nerves more difficult to distinguish, and avoid.

paraesophageal fundoplication hernia


Ian’s prognosis for a healthy and happy gut is favorable, but not certain. While the neurological component of his dysmotility will not change, his body should developmentally adapt to the conditions. This means that he will learn how to eat so he can be healthy, and comfortable. He will most likely never be a “three-meal-a-day” child or adult, but should be able to accommodate through smaller meals. Over time, his lifestyle will develop in a way to decrease nausea and vomiting.

We will do out best to keep on a low fiber, low fat diet. This can be hard when you are looking for higher calorie foods. We have been replacing snacks with reduced fat/ no fat options and minimizing high fiber cereals. With cheese, peanut butter, and frosted mini wheats being hugh *likes*, this can be difficult.


At the end of the day, it boils down to transferring more independence to Ian when it comes to feeding patterns. We have spent the last three years trying to cram as much food down his throat as possible. We are hoping that constant awareness and new protocols, will help us learn to relinquish some control. For now, we are charting his calories, but have been able to give up a lot of form in that charting. We no longer need to keep tract of meals. Instead, we can keep a simple list of foods eaten. As time passes, we should be able to let go more pieces of the puzzle, until they naturally fall into place without effort.

Our motility doctor told us that we have done an excellent job of teaching him skills, and using intensive feeding therapy to manage his troubles. He said now is the time to relinquish some control and give him more independence.... within reason. It will be difficult for us to not worry each meal about calories, timing, and weight...... but progress is progress, however we can get it.

Thank you to everyone who follows Ian story, offers love and support, and virtual *hugs* when we need them. Every few months brings huge lifestyle changes for us. Knowing we are not alone makes them much less scary. I know we talk about things becoming our “new normal,” but in reality, our “new normal” changes every few months. Thank you for supporting us as we find our next “new normal!”

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