Eat Happy!

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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Friday, June 21, 2013

Just for Fun!!

Meanwhile, Ian has had such a good time playing in the sun and growing big and strong. Enjoy some photographs from recent months.....
















Post CHOP Discharge Events~ Moving on up!

CHOP GI VISIT

We were excited (if you could imagine) to visit the GI doctor. We needed to be somewhere we would get help, and it felt good to be visiting a GI. However, we’ve had some turbulence with this GI before. She was our initial contact with CHOP, before seeing Dr. Blinman’s surgical clinic. Ian almost immediately herniated and vomited through the fundoplication he had..... sending us straight from GI to general surgery, and the GERD clinic. Unfortunately, GI and the GERD clinic do not have an ideal working relationship.

Upon visiting the GI, we were promptly chastised for seeing the GERD clinic, instead of the GI department, for Ian’s GI issues. She told us that since she hadn’t seen us in 14 months, and we had too much going on for her to manage on a daily basis, that we lived too far away and we would need to work with someone near us.... and she would help out. This was a HUGE blow to the stomach. We felt as though the wind had been knocked out of us. We were speechless. I had no idea what to say. We moved along with the appointment to see how it panned out. I had never been told Ian had “too much going on” or “lived too far away” to be managed by a doctor.

NEWS FLASH: We come to you *because* we have all this going on and can’t get the help we need back home. If we could, we wouldn’t drive three hours to see you.

She recommended a medication schedule for Ian that sounded promising. She began an alternating-rotating schedule for two of his meds (Erythromycin and Periactin), introduced a new med (Bethanechol), and left his other meds the same (Prevacid, Benadryl, Alvesco Inhaler, Neurontin, and Miralax). With eight meds set in place, we were hopeful some progress would be made. It was discouraging to hear that the domperidone (Motilium) was not even an option. The medication isn’t even available/approved through the CHOP GI clinic to even prescribe. Hopeful, we continued on... nervous about the new schedule and the prospect of working with someone closer to home.



THE NEW PROTOCOLS: MEDS, BOOSTING, DUOCAL, MIRALAX

The new medication schedule seem to start helping within the first couple days. Ian was able to start slowly building up his volumes again. We were regularly giving him five meals instead of four. The more frequent smaller meals were helping. We also made quite a bit more changes to his plan.

Around the same time as the GI appointment and the new medication schedules, we started changing the *added* calories in Ian’s diet. His food was no longer half-strength boosted, but was now three-quarter boosted. This meant he moved from half-strength-boosted-purees (HSBP) to three-quarter-strength-boosted-purees (TQSBP). Boosting is a protocol which incrementally increases the calories in a certain measurement of food. You can also boost drinks, but we have not done that with Ian.

I have written out a few guidelines below to follow for calculating the HSBP and TQSBP calorie content for 1-oz puree.


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MEASUREMENTS......... 

HSBP:

1/2-tsp of “booster” per every 1-oz of puree

**When using oils and butters, this amount is cut in half...

1/2-tsp of “booster” is added to every 2-oz of puree



TQSBP:

1-tsp of “booster” per every 1-oz of puree

**When using oils and butters, this amount is cut in half...

1-tsp of “booster” is added to every 2-oz of puree

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


**************************************************************

HSBP:

1-oz standard puree = 23 calories

Half-strength boosting adds 11.5 calories

(50% of the original amount) to the original 23 calories


This makes the new total calories 34.5


..... But, adding the 1/2-tsp per 1-oz adds volume


The new total volume is the initial 1-oz, plus the new 1/2-tsp (0.08-oz) = 1.08 oz


That 1.08 oz = 34.5 calories


Math then shows 1-oz = 31.8 calories


This rounded down number of 31 is the new calories per ounce.

(adding oils and butters changes the numbers a bit, but the same concept remains.)

**************************************************************


**************************************************************

TQSBP:

1-oz standard puree = 23 calories


Three-quarter strength boosting actually adds twice the calories half-strength boosting does..........


............... adding 23 calories to the original 23 calories


This makes the new total calories 46


..... But, adding the 1-tsp per 1-oz adds volume


The new total volume is the initial 1-oz, plus the new 1-tsp (0.17-oz) = 1.17 oz


That 1.17 oz = 46 calories


Math then shows 1-oz = 39.4 calories


This rounded down number of 39 is the new calories per ounce.

(adding oils and butters changes the numbers a bit, but the same concept remains.)

**************************************************************



** Boosters are specific food/drink/supplements that are typically moderately high in calories (ie: syrup, honey, butter, salad dressings, cheese, fruit preserves, instant formula, powdered milk, coconut milk, avocado, Benecalorie, Duocal......).

I’m sure a lot of that sounds mumbled. But, please let me know if you are interested and have questions. This is a plan set in place by Ian’s Dietitian at Children’s Hospital of Richmond (CHoR). It doesn’t seem to be common knowledge on the internet. Our Dietitian at CHOP was familiar with the protocol as well.

The Duocal leads me into our next change. We decided as a team to supplemental calories to Ian’s diet. Duocal is a prescription/behind the pharmacy counter powder. It is 25 calories per scoop. Ian currently takes 6 scoops a day, giving him 150 extra calories. We also use this to boost his food (veggies and some entrees only) before freezing. The molecule withstands heat and freezing. (PS- fruit boosts very well with fruit jams, jellies, and preserves).





The plan works out very well with Ian’s Miralax schedule. Ian receives 1/2 cap Miralax and 2 scoops of Duocal three times a day. We mix the powder with 4-6 ounces of water (depending on his free fluid needs).



FREE FLUID

We also have to keep a close watch on Ian’s free fluid intake. Ian’s recommendations are between 31-39 ounces a day. This is calculated from weight, age, activity level. We find Ian does best at 35+. This helps keep him pooping the way he needs to stay comfortable in his GI system. We calculate his fluid based on percentages. The purees are 50% free fluid, and the Nutren Jr formula he drinks is 85% free fluid. If he eats 20 oz of purees in a day, he gets 10 oz of free fluid. We make sure to add anything he drinks from a cup and also his Miralax/Duocal water. Sometimes we need to give free water boluses to make up for deficits. We also find on hotter days, Ian needs closer to 40 oz because of sweating and high activity levels outdoors.



GINGER

We also found ginger is our friend. Each of Ian’s three Miralax/Duocal doses include a small 1/4-tsp or so of ground ginger. It mixes in very well with the water. Ginger is known to help relieve nausea and stomach upset, and also aids in digestion and stomach emptying. It could be completely placebo effect, but we feel it is making a difference.





****** 



Since we have put all these ideas into place, Ian has been doing very well. Amidst all of this, we decided to battle CHOP GI for another GI consultation. After arriving home, Tom and I decided we did not like the way the appointment was handled in May. We were appalled that someone would tell us we have too much going on and live too far away. The general consensus across the support boards led me to believe the same thing. After a serious discussion with Tom, we decided seeing the other motility doctor for a consultation would be in Ian’s best interest.

I made a phone call to CHOP about the matter. It was a Tuesday. I explained to them the recommended treatment was working and Ian was doing well; however, we did not care for the way the information was presented, nor did we appreciate the tone of the appointment. I told her we didn’t appreciate the way we were chastised for seeking care with another department that was helping him and we were interested in finding another GI motility doctor that we could have a better, more professional working relationship with. I mentioned that we weren’t thrilled with the idea of working in conjunction with someone in our area because we live too far away. I felt as though the phone conversation was professional and straight forward. They told me they would forward the information to the motility department director and be back to me very shortly.

On Monday afternoon, I followed up on my phone call and there had been no resolution. I was also told that a particular clinical coordinator was managing the case. I left her a voicemail that day. I followed up again on Thursday with no reply to any voicemails earlier in the week. I spoke to the GI department front desk on Friday morning, hoping to hear some news after seven business days from my call. I received no information, or phone calls.

The next Monday I called the GI department again, after leaving a third unreturned voicemail from the coordinator. She said she would followup with her again. I felt bad because the front desk is unable to make the second opinion appointments and simply relays the messages. The lady I needed to speak with never returned any of my three voicemails within the two week period. I called patient relations that Monday evening. I explained the appointment and call situation with her. It had been two weeks since my appointment request. I had mentioned all along that I didn’t need an urgent appointment and we would be willing to wait. Ian was doing well. We simply wanted to work with another doctor.

I received a phone call Tuesday morning from our “Dr. House” at CHOP. As a diagnostician, he is able to help us coordinate care with physicians and treatment. Everyone had already been informed of the Family Relations phone call. “Dr. House” called me Tuesday afternoon to gather details about the situation. After a lengthy phone call with him, he informed me that we would be hearing form GI soon about an appointment.

Wednesday morning, the Diagnostics department called us again...... this time with an August appointment with the motility department director. We were very happy to have the new appointment on the books..... finally. I’m sorry, but two weeks to *schedule* an appointment is unacceptable. Like I said before, we don’t need the appointment to be now. we simply just need the appointment. It is sad to me that I had to even make the Family Relations phone call. One of my biggest pet-peeves is when people don’t do what they are supposed to do, or don’t do what they say they are going to do. I have enough to do without doing someone else’s job, and I do that way too much. I shouldn’t have to follow people around to get things done. Like I said, I can barely get my own s--- done without having to do someone else’s on top of that.


GERD CLINIC

We had one final piece to the puzzle to put in place. While in the midst of the hernia upper GI series, GI visit, GI struggle, and “Dr. House” help...we were trying to see the surgeon who runs the GERD clinic at CHOP. He is the one who discharged Ian because he was doing so well immediately after CHoR discharge.

This past week, we were able to meet with them. He was not the least bit surprised about our GI trouble. He was a nice shoulder to lean on and followup with. He knows Ian very well. He did feel that making a consultation appointment with the director of the department, or seeing our Dr. from our inpatient visit was a good idea. He also told us that working with someone back home might be ok, since the motility department director knows who to call, and they know him.

Dr. B said that he has only seen one gastric emptying scan with worse results than Ian's.  While not encouraging, it is hopeful the meds will continue to work since they are doing such a great job now.  He did mention pyloroplasty, gastric pacers, and J-tube as last resort options down the down.  Unfortunately these comes with several risks and side effects such as dumping and retching, amongst others.  Hopefully we can stay on the path to success and see long term relief for Ian.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


This brings us up to date on Ian’s medical journey. As side notes, Ian has new foot orthotics for his shoes and has had recent blood work done after being on growth hormones for 5+ months. He is growing extremely well and everyone is happy with his numbers. This week, he turned 28 pounds.... putting him almost in the 20% percentile for weight. His height is escalating rapidly as well, but not unsafely so. He hasn’t been sick and is a very happy little boy. Ian eats between 28-35 meals a week. We are down to about 2-4 meals a week with troubles (retching-vomiting). This is a huge decrease in relation to the 25-30+ troubled meals before treatment. Ian seems to enjoy eating again and even likes to help pick out his food!




CHEESE!!!!!


Tom and I continue to be overwhelmed by everyone’s love and support. While we know our road is tough, we remember the other families who are also struggling. We recently lost a little boy in one of our online support groups. He was a bright, happy, strong little boy. I loved looking at all of his smiley pictures. There are lots of children and families we pray for every night. Being part of such a loving community keeps us strong and brave. Thank you to everyone.


Balloon release for the loss of a sweet, smiley little boy
Balloon release for the loss of a sweet, smiley little boy

Help is on the way............

A FAIRFAX CRY FOR HELP 

While waiting for the surgeon to read the upper GI images at CHOP..... our local GI department, whom we dislike immensely, was our only “around-the-corner” GI resource. In a desperate cry for help, we visited with a nurse practitioner. We had never seen her before. Since Ian was a new patient, we had to spend 45 minutes “catching-up” on him. Once she had all the information and a handle on the issues, she immediately contacted our last GI doctor in the practice to consult...... the appointment was a major waste to us now.


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.

She returned to say the images appeared to show maybe a small hernia and loosening of the wrap (no news to us) with no reflux (also not new news) and that we would need to consult with the surgeon who did the wrap-fundo. Thanks lady..... we were already doing that. Why couldn’t you take care of this over the phone for us, instead of wasting two hours of our time and effort to go through every last detail... just to differ to someone else (which you have always done over the last two years anyway and is why we don’t come to you anymore.) PHEW, I’m exhausted just putting the story (and my comments to myself) into words. Needless to say, she knew nothing more by looking at the images than what Tom and I could figure out on our own looking at the images (which we had already done thank you.)

The office did increase his Prevacid Solutabs to 30mg/day. THis made sense since he was vomiting so much. he had previously been on half the dose, and was “growing out of it” in order to wean off. But, since he was no longer in the successful period to wean off, he needed a larger, therapeutic dose. Another change was an increase in the Erythromycin as needed. Ian has been on Erythromycin on and off for the last 18 months or so. Small doses of the antibiotic help move food along in the stomach from increased frequency and strength of contractions. In general, Erythromycin causes stomach cramping and contractions... which is why some people have a hard time with stomach upset when they are taking it when they are sick.



CHOP ER ADMISSION

A week or so later, Ian had “hit bottom.” He was constantly refusing food, but wanted to eat at the same time. As weird as that sounds, you know what I mean if you have a child with feeding problems. Ian wanted to eat so badly, but his negative experiences scared him away from trying what he wanted to do. It wasn’t long before the ‘3 week out appointment’ was’t going to cut it.

One morning, I called CHOP’s GI department to discuss options. Based on the situation, they recommended he been seen right away. Since we certainly did NOT want to see our local hospital and GI department, we selected CHOP. They notified the ER and let them know we would be in later that day..... as soon as we could make the three hour ride north.

Thankfully, we were able to get out of town very soon and to CHOP within a handful of hours. Because we were a “notified arrival,” we didn’t have to wait. The place we packed and I was very grateful for their urgent treatment. The ER took a few x-rays and drew some labs. About two hours in, we were admitted. The wait for a bed was not so simple. We were admitted the first week in May.

Ian was such a good boy in the ER. He was full of smiles and laughter.




We finally arrived in a room at 10:00P, seven hours after ER arrival. Ian was an angel and I cannot believe how patiently he waited for his room. CHOP has incredible rooms on their GI floor. Their newly renovated wing essentially has suites. They are spacious, with a bathtub, and full room size windows. It felt good to be in a place where Ian could get help.



Our personal GI doctor was out for the week (of course) so we saw another attending GI doctor. He was awesome. He cared about our concerns, was easy to talk to, and had great patient relations. Ian was in good hands. Unfortunately, he wasn’t Ian’s primary GI. He was able to order some tests and formulate a plan until we could visit our GI doctor for that original “three week out” appointment.



GASTRIC EMPTYING SCAN..... GASTROPARESIS....... check!

The admission was the first week of May, 6 weeks post CHoR discharge. It felt good to be in a place where we knew someone would pay attention to us. The trouble was, with the motility specialist out of town for the week, not as much could be accomplished. There is a second motility specialist, the director of the clinic. However, since we were established with the other doctor, he wasn’t able to do anything....... ridiculous in my opinion.

We tried to get a good night’s sleep before the next day came in a few hours. When the morning came, the doctors did their rounds. The attending physician in the GI department was great! We enjoyed working with him. He ordered a gastric emptying scan. This is a test to evaluate how quickly the stomach empties. Ian had one of these a long time ago, right after the G tube placement.

As we entered the room for the scan, we realized that Ian’s previous scan was really called a Milk Scan. Milk scans measure how fast certain fluids leave the stomach. A gastric emptying scan measures food. I immediately noticed a problem...... FOOD. The hospital uses egg to measure emptying. There is a radioactive isotope added to the eggs. Since they use various variables and measurements, their food has to be used. We were not able to feed Ian some of his own purees or crunchy foods. She brought out a scramble egg. I looked at it and then looked at her. Then I asked “and what do you do if he won’t eat it?” She looked at me like I was crazy. I told her about Ian’s G tube and feeding aversion (especially with foods like mushy scrambled egg). She seemed unfazed and simply told me to get him to eat it.

Obviously, this is easier said than done. She did tell me that he only needed to eat about 2/3rds of it, but the more the better. She told me we had 10 minutes to get him to eat it. I knew this was going to be a challenge. Surprisingly, Ian was hungry enough to try the egg. The first couple bites weren’t so bad.... but getting him to swallow was tough. He wasn’t able to efficiently swallow because he couldn’t ‘feel’ it the same way he does tougher foods he chews or smooth purees he simply swallows. For Ian to chew something soft and then swallow it is quite a challenge. We gave him a few drinks to help wash it down.

After 10 minutes, he had barely had half the egg. I was getting worried we wouldn’t be able to do the test we needed... or worse, spend two hours doing the scan, just to find out it was inconclusive because he didn’t eat enough. The radiologist gave Ian 5 more minutes to eat a bit more. When all was said and done, Ian had eaten almost 2/3-rds of the egg in the 15 minutes. We were cleared for the scan.

Ian did a great job lying on his back strapped to a table for 2 hours! The scan includes and x-ray of his stomach every 10 minutes. In between the 10 minute x-rays, he was free to wiggle around. The hospital has tvs for the kids to watch movies. Thanks to Finding Nemo and Cars, he did a great job!!




The two hour test showed only a 25% emptying rate. This meant that it takes 8 hours for Ian’s stomach to completely empty (approximately). This is not good. The goal was to empty over 50% in the 2 hour scan. Ian was swiftly diagnosed with delayed gastric emptying, also called gastroparesis.

American College of Gastroenterology

http://patients.gi.org/topics/gastroparesis/

Medscape Gastroparesis

http://www.medscape.com/viewarticle/572819_3

Gastroparesis is a condition which is usually chronic and progressive. Small children can have varying prognoses since their bodies are still growing enormously and developing every day. Only time will tell what Ian’s future will be like. The delayed emptying can be caused by so many different things. The number one reason is Diabetes related...... which we know isn’t an issue. Other reasons include acute illness and vagus nerve damage from abdominal surgeries. It was pretty clear that vagal irritation-damage was the root of Ian’s issues.... especially since he has had two abdominal surgeries. Acute illnesses over the last handful of months could have played a role, but not as likely as the surgeries.

Complications Associated with Laparoscopic Anti-Reflex Surgery

http://www.ncbi.nlm.nih.gov/pubmed/9434220

NIH

http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/

The surgeries prove to be a more likely cause because Ian has always had motility problems. Ever since we resolved the reflux with the G tube and Nissen fundoplication, Ian has had retching and motility issues. Tom and I have be certain for a long long long long time this has been an issue. We have repeatedly been pushed to the side as far as gastric emptying has gone. As a sideline, Ian had been taking erythromycin on and off to help with “suspected” motility concerns. CHOP has never really agreed with him needing this assistance.

The trouble with erythromycin for this treatment is that you can build up a tolerance. This is called tachyphylaxis. For this reason, an alternating on and off schedule is recommended. Unfortunately, Ian has never had someone to manage the treatment that is comfortable recommending a schedule for us. At this point, Ian’s erythromycin was not helping anymore. He was taking off of the medicine and put on a new one.

The name of the new medication is Reglan. Reglan is a motility medication that can be very dangerous. Since Ian had been on several other motility medications without relief, we were out of good options. Reglan helps tons of people. It is an excellent medication, but carries a high risk of serious side effects. The FDA has given the medicine a black-box warning due to the risk of tardive dyskinesia (TD). TD is involuntary, repetitive muscle movements. The neurological disorder often results from antipsychotic drugs. Those effected by TD are often the elderly (particularly women) and those on the medication for a long time. Infants also carry a high risk.

The medication worked very well for Ian. It started working instantly. He was started out on a very low dose. We stayed in the hospital for about 12 hours after the medication was put in place. We were hopeful the medication would work for Ian. While nervous, we knew that the chances of something wrong happening were very slim..... but, we also know that if small chance something will happen, it will happen to Ian.


ARRIVING HOME

Sure enough, Ian wasn’t home and on the medication 36 hours before we noticed tongue-lip licking and smacking. It happened mostly when he was doing something else. The TD typically is a passive/subconscious activity. It was pretty clear he wasn’t doing it on purpose. After a quick phone call to the GI doctors, Ian quickly came off the Reglan.

We were disappointed and relieved at the same time. We were happy the medication was helping his emptying, but worried about him being on it for a long time. Now, we didn’t have to worry anymore. We had a follow-up appointment one week after Ian stopped taking the Reglan. We would have to wait for the next step.

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.



POOPY PROBLEMS

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!)



VISCERAL HYPERALGESIA

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

http://www.ncbi.nlm.nih.gov/pubmed/8020671

Functional Abdominal Pain and Visceral Hyperalgesia

http://www.articles.complexchild.com/00006.pdf

Gastrointestinal Disease: Visceral Hyperalgesia

http://www.muschealth.com/multimedia/podcasts/transcription.aspx?podid=647



LONG TERM LOWER GI

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.



SENSORY

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!



CALLING FOR BACKUP- LOCAL GI

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.



TO HERNIATE OR NOT TO HERNIATE?

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.



CONTINUING FEEDING REGRESSION

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.