Eat Happy!

Eat Happy!


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Friday, June 21, 2013

A Downward Spiral after Children's Hospital of Richmond Discharge

We returned home from the Children’s Hospital of Richmond (CHoR) feeding day program on March 22nd. Everything seemed to be moving along smoothly...... until it wasn’t! About a week after beginning our at-home feeding journey, Ian began retching and vomiting once more. As we noticed old habits coming back, we stuck to our guns and stayed with the feeding program protocol. We tried small “tweaks” to keep Ian moving forward, but it seemed nothing worked.


Ian’s intake volumes began increasing once we were at home in April. We started noticing a lot of episodes happening around “poop-time.” As his solid food intake increased, so did the bulk of the stool. The retching episodes seemed to be at both mealtime and “poop-time.” He was bearing down quite a bit and turning red. We all decided it would be best for us to increase his Miralax dose. He had previously been on 1/4 cap per day. He progressed from 1/2 cap to 1 full cap fairly quickly. This gave Ian some relief, but he still seemed to be having lower GI pain. While he wasn’t crying, he wiggled and grunted as though he was struggling.

Typically, children with feeding troubles often have potty troubles...... why not right? After being home for a few weeks with no resolution, Ian was settled on 1.5 caps of Miralax a day. This helped tremendously! Of course, this is a very high dose for a child of 27 pounds. But........ with Ian, any struggles or moderate effort needed to poop, creates discomfort and vagal nerve disruption. (As you’ll remember from some previous posts.... the vagus nerve runs through the entire digestive tract and can create gagging and retching/vomiting while passing bowel movements. The upper and lower GI tract are triggered at the same time. Think of the flu or horrible virus..... get it...... there ya go! We’ve all been there!)


This brings us back to unexplained visceral pain. Visceral pertains to the organs and hyperalgesia is ‘increased pain.” With this condition, any pressure, pushing, contractions, air-bloating, constipation or the lower GI tract creates pain. Spastic muscle contractions of the stomach, called pylorospasms also create pain as the stomach empties into the small intestines. The pain is a sensation that should not be felt. Typically, these things are not felt by you or me..... but create pain for Ian. His lower GI tract essentially needs to perform its work with little effort in order to feel like you and me.

The best reference to this condition is fibromyalgia. In fibromyalgia, nerve and muscle pain is experienced for reasons that shouldn’t be a problem. The same thing happens with the nerves in the GI tract in visceral hyperalgesia. The nerves are at a heightened sense of alert for some reason with pressure, nausea, gas, digestion, and bowel movement.

Basic and Clinical Aspects of Visceral Hyperalgesia

Functional Abdominal Pain and Visceral Hyperalgesia

Gastrointestinal Disease: Visceral Hyperalgesia


We found a good blend of meds in the last half of April. Thanks to the heavy dose of Miralax and a high-but-appropriate dose of Neurontin (Gabapentin), Ian is comfortable. He has bowel movements with little effort and does not experience discomfort while pooping, passing gas, or having mild bloating or stool with-holding. Once the medication was in full-swing, this part was no longer a problem. As gross as it sounds, keeping Ian’s poop at a “runny-oatmeal” consistency to a very mild pasty consistency is best for him. If Ian has pasty poops or formed poops of any kind, retching and vomiting ensue because of discomfort and pain in the GI tract. As in fibromyalgia....... this is most likely a chronic, yet manageable, condition. Thankfully, Ian has not had any Neurontin side effects.

There is some correlation with irritable bowel syndrome (IBS). Kids of this nature tend to be more predisposed to conditions such as IBS. At this time Ian is not experiencing any concerns there. IBS can entail *constipation, *diarrhea, *or both alternating. As Ian GI tract develops, we will just have to see how it plays out.


Following along on the visceral hyperalgesia thoughts..... children with sensory issues and feeding troubles, tend to have “internal” sensory issues. Let me preface that by saying that in utero, the digestive tube is formed when the “lima bean” turns in on itself. The outside “skin” folds in the form the long tube that is the digestive tract. That being said, the inside of your digestive tract is made up of very similar cells as the external skin of your body. Crazy, I know..... but true!

Ian has always been a sensory oriented kid, both “seeking” and “averse.” Ian has been “seeking” in pressure and movement, but “adverse” in tactile manners. It was no surprise to me to learn of this concept. Ian’s ‘external sensitivities,’ were also occurring inside. This is a wild phenomenon that is fairly un-researched.

We were hoping things would turn around once we had the visceral hyperalgesia component taken care of with Miralax and Neurontin. However, that was not the case. That was not the case at all!


Over a couple weeks, things continued to get worse very quickly. Desperate, we called the GI department at CHOP. We explained the situation over the phone and they were able to giver us an appointment, for three weeks out. This was not ideal, but at least we were “squeezed” into the schedule somewhere. CHoR was not able to help us from a pharmacological standpoint... and without further testing, it was a shot in the dark as to what was causing the problems. We would just have to wait for the CHOP GI appointment.


We visited the pediatrician in the middle of all this to find investigate a herniated fundoplication. This was the last week or so of April. Ian’s first hernia was repaired last summer. This, then, was his second fundo. The previous hernia produced signs such as retching and vomiting and even stretching, leaning, and wiggling (to keep food down in the stomach). With Ian’s current symptoms, we were afraid he was experiencing a ‘repeat.’

Our local GI department is.... well..... I have no nice adjectives so I’ll refrain. We have seen about half-a-dozen doctors there and non of them help Ian. He does not git into their practice ‘box.’ They ran out of ideas a long time ago with him. We knew they weren’t going to be any help.

We were able to get a ‘same-day-urgent’ upper GI series that day. After a quick rush to the local hospital, a radiologist (with no fundo, nor pedo fundo experience) performed the test. We had to instruct her on how to use the G tube equipment needed and where to insert the fluid. In order to test for a hernia, the fluid needs to go into the G tube and then viewed to see if it is coming up into the esophagus. After talking through and performing the procedure, it was, of course, inconclusive. Another dead end.

We took the images home on a disc. Tom and I have seen seven or so of Ian’s upper GIs and we know what we see. While the doctor didn’t know, we did. Some of the stomach, very very little, was above the diaphragm. Also, the wrap had slightly loosened, although nothing was refluxing into the esophagus. This was good news.

After sending the images to the original surgeon at CHOP who repaired the hernia, he was cleared. The surgeon saw no reason for further surgery since a hernia was not present. This was the same doctor Ian visited at CHOP for his GERD and post-prandial hypoglycemia (dumping syndrome) diagnoses. Ironically, two weeks after being home from CHoR, Ian was doing so well that he dismissed, “graduated,” him from the clinic because he was doing so well!

The top black bubble shows a small amount of the stomach above the diaphragm.
The diaphragm is noted by the diagonal gray line.
The Toupet Fundoplication (wrap) is the gray-black band between the large black area and the small black bubble. 

We didn’t hear much from him after viewing the images. Without a hernia, this was a GI problem.


About a month after returning home from the clinic, around the end of April, things were getting really bad. Ian’s volumes had plummeted. After vomiting and retching with over half of his meals, he stopped eating again. It seemed that all the work we accomplished at CHoR was going right down the tubes... figuratively and literally!! Ian was needing more and more formula through the tube to supplement what he was no longer eating. Trouble was, he couldn’t tolerate the tube meals, and certainly couldn’t tolerate the overnight volume he needed. We were struggling to get food into him anyway we could. He repeatedly was no longer meeting his calorie goals.

Through his weekly outpatient appointments at CHoR, we were closely watching his weight and Ian had been going up and down for the last month. At this point, he started losing weight due to his lack of consumption and increased vomiting. We tried backing down on his volumes at each meal, while increasing the number of daily meals. We hoped smaller, more frequent meals would help keep him stable and maybe even make some progress. Once again, we did not get the outcome we were hoping. It seemed as though there was no good way to get food into Ian.

We needed more help.

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