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Eat Happy!

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**The information provided in this BLOG is in no way intended to diagnose, treat, or cure any illness. This information should never replace the advice of a doctor. Please use this information as you see fit. This information will pertain differently to each child, each adult, and each family.**

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Thursday, April 24, 2014

The Nervous System and Digestion

Due to the size restrictions in the post,
I was unable to insert large images.
Please click on any of the images to
bring up a full size, text friendly, image.

ANATOMY

There are many branches of the nervous system. I have talked a lot in previous posts about how the vagus nerve affects digestion and other organ actions. But, it occurred to me that I never gave a scientific explanation of where the issues originate. The nervous system is incredibly complex and very difficult to understand. I am going to do the best I can to simplify it and use terms that are easy to understand. Hopefully, the concepts of how the vagus nerve, and both sympathetic and parasympathetic system medications will be easier to understand. I am hoping it will be easier to make the science--->symptom connection clearer.

The nervous system consists of the brain, spinal cord, and sensory organs, and all the nerves that connect. Collectively, they control the body and communication. Most of us know that the brain and the spinal cord form the central nervous system (CNS). This is the headquarters of the nervous system. All of the sensory nerves and ones with organs form the peripheral nervous system (PNS).






The first branch of the PNS is the Somatic Nervous System (SNS). This includes all of the voluntary nerves. It is consciously controlled and is responsible for skeletal muscles. The second branch of the PNS is the Autonomic Nervous System (ANS). This includes all involuntary efferent (motor) neurons that carry signals from the CNS to muscles and glands. The ANS controls our subconscious muscle actions of the organs (viscera) and heart tissue. It also controls the actions of glands.

Two divisions of the Peripheral Nervous System (PNS)
There are two branches of the ANS. The Sympathetic is the classic “fight or flight.” When placed in stress or danger, the body reacts by increasing breathing and heart rate. Stress hormones are released and digestion decreases. The second branch of the ANS is the parasympathetic. This division is coined “rest and digest.” It responds when the body is relaxed, resting, or feeding. It decreases breathing and heart rate. The parasympathetic branch of the Autonomic Nervous System (a branch of the PNS) also increases digestion and helps eliminate waste from the body. This will be important information in this post. (*) This branch also helps calm the body down and undo the work done by the sympathetic branch.

Two divisions of the Autonomic Nervous System

Cranial nerves extend from the underside of the brain. There are 12 pairs. Each one has a roman numeral to identify it. Cranial nerves provide direct connection to the brain for special sensory organs such as muscles in the head, neck, and shoulders. They also innervate (supply with nerves) the heart and GI tract. The cranial nerves, GI tract, and their effect on digestion will be important information to take from this post.(**)





THE VAGUS NERVE AND DIGESTION (CRANIAL NERVE X)

(**) There are a few cranial nerves that help with chewing, swallowing, and digestion. The oculomotor, trochlear, and abducens nerves (III, IV, VI) help with chewing. The glossopharyngeal nerve (IX) helps with swallowing. The hypoglossal nerve (XII) moves the tongue for swallowing. The major cranial nerve that plays a role in digestion is the vagus nerve (X). The vagus nerve travels from the base of the brain through the neck and torso. It carries information from organs to the brain. It also delivers parasympathetic signals for digestion to the organs.


Vagus Nerve Innervation



(*) As you can conclude from the photo above, the vagus nerve seems to be a catch-all. It provides the body with a sense of fullness. It functions to relax the stomach. This prepares the stomach for food. It also empties the stomach contents into the small intestines. The stomach contractions are also signaled by the vagus nerve. In conjunction with the parasympathetic branch of the autonomic nervous system, (PNS ---> ANS ---> Parasympathetic nervous system), the vagus nerve helps both contract and relax the muscles to facilitate emptying the stomach into the small intestines.

SURGICAL PATHOLOGY OF THE VAGUS NEVE

The vagus nerve runs very close to the esophagus. During fundoplication surgeries, it is possible to damage this nerve. While that sounds absolutely horrible, it isn’t an all-or-nothing deal. There are varying degrees to which it can be affected. Damage certainly does not always mean severing the nerve. To make matters worse, it is not always possible to diagnose damage. Damage cannot always be seen. There are some test that can be done. I am not familiar with these because I have not heard of them being used in children.

Close proximity of the Vagus Nerve during a Fundoplication surgery

There is a lot of research out there about the vagus nerve and it’s relation to fundoplication surgeries. Unfortunately, it is incredibly hard to sort through. I have tried to categorized this information on the Resource Pages of this BLOG. Categories include: “Surgical” and “Vagus Nerve Damage and Digestion (Gastroparesis).” I have also included a page called “Motility Contacts and Medications” to help find contacts that can help.

SYMPTOMS OF VAGUS NERVE DAMAGE

There are many symptoms of vagus nerve damage.

1) Gastroparesis is an extremely common symptom. This is where the stomach does not empty properly, allowing food to accumulate in the stomach. Gastroparesis must be managed with diet and medications. Over time, the body can learn to adapt to a new lifestyle that accommodates gastroparesis. Gastroparesis has no cure because of it’s autonomic-pathological causes.

2) Nausea and vomiting (potentially from the early feeling of fullness from gastroparesis) are very common vagus nerve damage side effects. 

3) Diarrhea is another common side effect. The diarrhea may improve over time.

4) Gas bloating can also occur. Excess gas in the stomach can also irritate the nerve. With gastroparesis, food remains in the stomach for too long. As food is digested, air is released. As this air remains trapped in the stomach with the food, bloating can occur. This decreased gastric emptying can be caused by the vagus nerve, but then the built up air can aggravate the nerve. It becomes a cyclical pattern that is hard to break.

5) Reflux is also a symptom. Because of the stomach's inability to hold larger amounts of food (from the backing up of gastroparesis), the stomach content may reflux back into the esophagus.

Since the vagus nerve relays messages back and forth to the stomach, as well as controlling the muscles that break down food and allow it to pass into the small intestines, it is easy to see how the slightest damage can cause large problems. There are many other symptoms that can occur. Since it is close in proximity to the esophagus, it is plain to see how easily it can be damaged during routine procedures. Gastric and esophageal (as any) surgeries create scar tissue when they heal. Scar tissue is much lighter in color, thicker, and harder to dissect. If repeat surgeries need to be done, the nerves are even harder to see. The more delicate tissues are then considerably more vulnerable to damage. The risks increases with each surgery.

An actual photograph of the proximity of the Vagus Nerve to the esophagus and stomach

MEDICATIONS (CHOLINERGIC AND ANTICHOLINERGIC)

Acetylcholine is a neurotransmitter (chemicals that transmit signals) that helps aid the movement of smooth muscles in the stomach, increasing gastric motility and digestion. Higher acetylcholine levels increase parasympathetic functions such as peristalsis (gastric contractions) and facilitate gastric emptying. There are both Cholinergic and Anticholinergic medications.........

1) Cholinergic medications increase the amount of acetylcholine that can attach to cells. This increases the Parasympathetic nerve function, which facilitate stomach contractions and the digestion of food. So, this means that cholinergic medications increase smooth muscle in the stomach and increase stomach motility. When erythromycin is used in low doses to increase stomach contractions, it is working through a cholinergic pathway.

2) Anticholinergic medications block acetycholine in the CNS and PNS. They inhibit Parasympathetic nerve function by blocking acetylcholine from attaching to cells. As you’ll remember from above, Parasympathetic nerves aid the involuntary movement of smooth muscles in the GI tract. Anticholinergic medications decrease the amount of acetylcholine. So, this means that anticholinergic medications decrease smooth muscle movement in the stomach and decrease stomach motility. However, these meds help ease nausea and relieve diarrhea. They are also able to ease pylorospams (exaggerated and inefficient contractions of the pylorus- the valve that empties the stomach into the small intestines).

Nausea medications and gastric motility medications work in opposite ways from one another. In most cases, one medication needs to take precedence over the other. One of Ian’s medications, Bethanechol, is an Anticholinergic. This helps ease his nausea and reduce vomiting, but as you can see...... it decreases gastric emptying. Finding a good balance between using medications is very important. We had considered using Levsin recently, which is a Cholinergic. Levsin helps relax the pylorus and facilitate gastric emptying. It would not make sense for Ian to take Bethanechol and Levsin at the same time.

It is very important to review all of your medications with your doctors to make sure you are on a correct balance. I often find that different specialists prescribe medications without realizing the others may be canceling the effects. When it comes to medications of the Autonomic Nervous system (Sympathetic and Parasympathetic), it can be extremely difficult to keep things straight.

IAN’S MEDICATIONS

Cholinergics: Erythromycin

Anticholinergics: Benadryl, Periactin, Bethanechol, Hydrocortisone, Neurontin

While not all of the Anticholinergic medications have strong effects, you can see how it is important to balance meds properly. Right now, Ian is on many anticholinergic medications for the treatment of mucus secretions, organ discomfort, and nausea. But, they are NOT helping him empty his stomach. This is something that needs constant evaluation.
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CONCLUSION

To sum things up....

** The nervous system has two branches: CNS and PNS.

** The PNS then has two branches: Somatic and Autonomic.

** The Autonomic then has two branches: Sympathetic and Parasympathetic.

** The Parasympathetic nervous system is the one that deals the most with digestion by increasing digestion and helping eliminate waste from the body.

** A cranial nerve called the Vagus Nerve is the one with the most responsibility when it comes to organ functions. It carries Parasympathetic (digestion) signals to the organs.

** The Vagus Nerve stimulates digestion stomach contractions and stimulates the emptying of the stomach contents into the small intestines.

** The Vagus Nerve runs extremely close on either side of the esophagus and damage is listed as a risk of surgery.

** Vagus Nerve damage can create many digestive and sensory problems including: nausea, vomiting, reflux, gastroparesis, bloating, and diarrhea.

** Cholinergic medications increase parasympathetic activity and increase gastric emptying while anticholinergic medications decrease parasympathetic activity and decrease gastric emptying, but also decrease nausea.



I know I have repeated myself A LOT in this post, but I find the nervous system to be *e-x-t-r-e-m-e-l-y* confusing! I know hearing things over an over again in different words can help solidify concepts that can then be used when making good medical decisions for our children. I have been looking to put this post together for a long time because I feel it is truly important. I hope it has been a source of clarity for all of you.

Wednesday, April 16, 2014

The FOUR Dysmotility Components of the Stomach

(emptying, accommodation, pylorospasm, sensory)

Johns Hopkins PDF link that talks about Gastroparesis and discusses all four components expressing a basic understanding of dysmotility

We had an interesting talk with the motility doctor about the four issues that can cause issues on the stomach. Ian has chronic conditions affecting all four of these.

1) Accommodation:

Ian’s has had a fundoplication. When this happens, the top of the stomach (fundus) is wrapped around the base of the esophagus and stitched together (“plicated”). When this happens, the size and shape of the stomach are permanently altered. The fundus is essentially taken away. This is the part of the stomach that contracts to help move forward down through the stomach. Without it, the stomach is already at risk of emptying troubles. Ian’s stomach is unable to accommodate the volume that it did before the fundoplication. While our stomachs stretch to accommodate a large meal, Ian’s is unable to do that to the degree that an unaltered stomach would be able to do. Ian is not on any special medication to help with accommodation other than the motility medications to help move food along, in order to make room for “new” food to enter.


It is easy to see in this picture how the stomach decreases in size as the fundus (the top portion of the stomach) is used for fundoplication.




2) Emptying:

It is not new news that Ian’s stomach has trouble emptying. In his recent gastric emptying scan, he emptied 35% of his stomach in the first hour. Within two hours, he had emptied 51%. Ian was taking his motility medications for the study. The motility doctor wanted to see how well his medication was working. After the first two hours, they took another picture at three hours and then again at four hours. After four hours, Ian’ stomach had only emptied 58%. This means between the second and fourth hours, Ian only emptied 7%. This is because his motility medication, erythromycin, works for around two hours. After two hours, the efficacy declined considerably. It is meant to be a short acting medication. The 58% emptying in two hours is not bad, but the 7% emptying in the subsequent two hours is unfavorable. A normal scan would have shown 90% emptied after four hours.

Ian is taking erythromycin and bethanechol to help empty his stomach. The erythromycin works by adding some strength to existing contractions to help move food through the stomach. The bethanechol helps by tightening the upper esophageal sphincter, the valve at the base of the esophagus that leads into the stomach, By tightening this sphincter muscle, the food is in a sense *pushed* down and through the stomach. Ian’s motility doctor does not think that the bethanechol is helping with his emptying and he feels that the erythromycin is doing very little...... although, we will be holding onto the erythromycin for a while longer.


Here are two pictures of gastric emptying scans. The top of the images are the stomach and the lower portion are the intestines. These are not Ian’s scans, but appear in similar form.

Normal Gastric Emptying Scan

Abnormal Gastric Emptying Scan


3) Pylorospasms:

The pyloric valve empties the stomach. It is located at the base of the stomach and contracts to release digested food into the small intestines. It is another sphincter muscle. The contractions that release stomach contents, called chyme, are supposed to be regular in strength and frequency. There is some variability, but the contractions should be fairly regular. These muscle contractions are slightly altered after a fundoplcaition, as the stomach shape and emptying ability has been altered.  Ian has never had manometry testing to find this abnormality. His GI doctor knows something is off, but feels testing to prove it would be unnecessary. He feels that if need be, we would simply try an anti-spasmotic medication to help.

A pyloroplasty is a surgical procedure that cuts the pyloric valve and allows it to open more fully. Ian was never a candidate for this procedure because he has a history of dumping syndrome. Dumping syndrome is when the stomach contents leave the stomach all at one time (whether it be sooner or later). Part of Ian’s motility problems are that his stomach does not empty properly whenever it does empty. He could be having pylorospasms, dumping syndrome, and gastroparesis all at one time, They simply come in different patterns.

Ian is not taking an anti-spasmotic medication to help relax the pyloric valve. He is taking medications to create spasms for emptying (erythromycin and bethanechol) If we decide to try Levsin, this is an anti-spasmotic medication... The two, bethanechol and Levsin, cannot be taken at the same time because they effect the nervous system in two different ways. Bethanechol is a cholinergic and Levsin is an anti-cholinergic.

** See Nervous System description post **




4) Sensory:

It was once explained to me that internal and external sensory issues are connected. This was intriguing and I recalled some information about gut formation from my embryology class in school. As the embryo is forming, the outside turns in on itself. This inward turning forms the digestive “tube” as it is called. This means that the inside of our digestive tract is formed of the same “types” of cells as our skin. **They are not made of the same cells. ** They specialize into digestive cells. But, you can think of them as cells that come from the same “family” stem cell type.

While Ian has always had sensory issues, his digestive sensory issues have always been much more extreme. Ian’s external sensory issues have calmed down considerably thanks to occupational therapy, development, and simply time. Ian’s digestive sensory issues are currently managed by Neurontin and Periactin. The Neurontin helps him with visceral hyperalgesia...... increased pain of the organs. In Ian’s case, his digestive organs (stomach and intestines mostly). The Periactin helps by stimulating appetite.

The embryo has three layers: ectoderm, mesoderm, and endoderm. The ectoderm forms the skin, but also the lining of the mouth, throat, and rectum. The rest of the GI tract (esophagus, stomach and intestines) is formed by the endoderm. However, the endoderm cells are ectoderm cells that have migrated to the center as the embryo begins to turn inward. While they may be a bit confusing, I have included a couple pictures.




*** You can see in the “blastula” photo that the red begins to form as the blue caves in on itself. ***
*** The blue becomes the ectoderm (outer layer) and the red becomes the endoderm (inner layer). ***

*** Here again, the blue ectoderm turns inward to form the yellow endoderm. ***



Here are a few links that reference the topics above...




Stomach Diagram



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.

GROWTH

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.




HOW THIS DICTATES TREATMENT OPTIONS

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 NEXT STEP: BACKING OFF

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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). 

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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.

CAUSES:

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


PROGNOSIS:

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.


CONCLUSION:

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!”

Monday, April 7, 2014

A Retching Account via February 2013

I came across this video again today. I still feel it is important enough to share. Any parent of a child who suffers from retching, for any reason, should see. Ian was retching from a combination of reflux, vagus nerve damage, feeding intolerance, dumping syndrome, excessive mucus production from vagus nerve damage, and visceral hyperalgesia. I know there are so many reason rolled into one..... but I wanted all the mommy;s to know that if your child is doing "this," it could very likely be attributed to one of these causes. It helps to know you are not alone!

Ian continues to retch, but with much less frequency and pressure.



This BLOG has lots of retching resources, research, and experiences.

Hope's Alley...

I'd like to take a moment to recognize a friend of mine dealing with Gastroparesis. She has an excellent store online. She hand makes jewelry, designs shirts, and sells GP awareness items. She is amazing and is an inspiration to me. She has such a passion for what she does, and amazing has time to give back to others in such a beautiful way! Visit her store here...

Thursday, April 3, 2014

"Fortune Favors the Bold:" Nothing Ventured, Nothing Gained...

We are headed to Philly tomorrow for Ian's Friday appointments. We will be meeting with the director of the the motility clinic (our GI doctor) about our options. As you'll remember, Ian failed his gastric emptying scan miserably in February, showing that his stomach takes about nine hours to empty a regular medium sized meal. Ian has taken, and maxed-out, both conservative and some controversial FDA approved medication methods.

We are now looking into other options, including experimental medication trials. Tom and I have decided we would like to move forward with a domperidone trial, assuming Boston Children's Hospital is in agreement. Our GI doctor used to work with the motility docs at Boston and has been reviewing Ian's case with them. We will also have the opportunity to discuss other options such as a GJ tube, other medication clinical trials, and procedures such as Botox to relax the "emptying valves" and gastric pacers (at Children's National in Columbus, OH). A pyloroplasty will also be discussed, but is unlikely with Ian's history of dumping syndrome.

We would once again like to thank everyone for their love and support as we make these difficult decisions. There is no 'easy' answer and each one comes with benefits and risks. I pray that through knowledge, research, love, and good doctors in our corner.... that we will make the best decision for our family. Which of course, is not the best for everyone. Each child and family is different and we feel confident we will make the best decision for the next step in his journey. His path is always winding in uncharted territory and we are thankful have such a strong powerhouse to support such a powerful child. He is my hero!

~♥~~~♥~~~♥~~~♥~~~♥~~~♥~~~♥~~~♥~~~♥~~~♥~~~♥~~~♥~~~♥~~~♥~~~♥~~~♥~