Upper GI Series, Endocrine Blood draw and visit, Bacteria/Virus results, Occupational Therapy, Endocrine Fasting test, GERD clinic Dietitian visit, Button upgrade
Endocrine Blood Draw
This morning began early with Endocrine blood draws at 4:30am. Thankfully Ian went right back to sleep. They took several vials of blood to test for:
Ammonia levels in the blood
for GI bleeding
Lactate levels in the blood
for glycogen storage disease
Cortisol levels in the blood
for vomiting and diarrhea to rule out pituitary gland malfunction
Insulin-like Growth Factor
for pituitary functioning
Insulin-like Growth Factor-Binding Protein 3
these binding proteins act as “carrier proteins” for Insulin-like Growth Factor
The ammonia and lactate tests came back negative today. The cortisol showed to be low; however, this tests it to be done between about 7:00 and 9:00am. The blood was taken at 4:30am, hence the levels were too low. Cortisol peaks in the bloodstream around 7:00-9:00am. They will take this again tomorrow morning to make sure all levels are normal. The two Growth Factor tests will take a few days to return with results.
Upper GI Series
Not to long after this, about 10:00am, we traveled to radiology for the Upper GI Series using fluoroscopy. This is the 6th study Ian has had, it was nothing new to us. After putting about 4 ounces of barium through the G-tube, Ian’s Nissen was shown to be “in-tact” and functioning. The Radiologist was about to see the hernia, but there had been no change since January. This is good news. We heard later on from the Dietitian that surgery is indicated when the hernia begins to cause trouble. It may, or may not, be causing trouble now. We visit with our CHOP surgeon who manages Ian’s feeding routine and Late Dumping Syndrome next week.
Thankful that the Nissen hadn’t “busted” open, we returned to the room. Still, we didn’t know what was causing all the vomiting, or the blood in the stool. Hopefully, the surgeon will be able to shine some light on the future of the Nissen next week. This week he, OF COURSE, is out of the country and unreachable. His dietitian has been our liaison there and she is wonderful!
An OT came to visit today to asses Ian and do an overall evaluation. She, as expected, found Ian to be at expected, normal, levels and said he is doing very well. She encouraged us to do sensory play and push the sensory boundaries with him to give him more exposure. We can do this at home, as we have been.
GERD Clinic Dietitian Visit
Robin is Ian’s Dietitian here at CHOP. She works with the surgeon, Dr. Blinman, running the GERD clinic. Lots of these patients, such as Ian, are children who have had Nissens and such that continue to have problems. Dr. Blinman and his team are very “outside-the-box” thinkers and their techniques are criticized all over. I can tell you though, Ian has always been an “outside-the-box” kid, and they have been the first ones to help us when it comes to GI reflux in a LOOOOOOONG time.
Most of their kids revolve around Nissens that have created dumping issues as a side effect, Ian included. They have a long list of things they move along to find each kid’s “Happy Place.” The feeding routine, recipe, including the additive of Microlipid, Pectin, and Cornstarch are all theories of their program. The Microlipid is designed to give longer-chain fats to the diet to allow Ian more time to break them down without the fats “flying” through his system during the “dump.” This elevated blood sugar would in turn, trigger large insulin releases. The pectin is literally canning pectin. This is added to slow it down in the intestines and allow for more time as well. The cornstarch is added, both for calories, and for extra carbohydrates for him to break down..... avoiding more simple-sugars.
talks a little about fats and cornstarch to help “buffer” blood sugar levels
talks about Microlipid, long chain triglycerides, as a way to delay gastric emptying and prevent “dumping.”
talks about pectin and how it slows glucose uptake in the blood
Ian’s surgeon’s article on the frontier of post-prandial hypoglycemia, late dumping syndrome
While most of what I just talked about is a re-hash of previous discussions, I feel like with everything going on, it is important to understand why Ian is on the diet he is on, especially since a lot of GI doctors do not agree with this treatment. I’m not sure why, but I get the feeling form a lot of doctors while we are here that they feel it is very “experimental.”
Robin and I discussed again why what we are doing has helped and she reassured me that Dr. Blinman would discuss any vomiting, Nissen, feeding issues when we see him next week.
Bacteria/Virus Test Results
All of Ian’s stool tests are finally back. All the of bacteria, including c.diff (for the 7th time) have come back negative. The viral testing showed something different. Ian has test positive for Norovirus! While norovirus is responsible for about 80% of gastroenteritis, it is not usually tested for, unsure why... but back in January when he had THE BUG, they did not test for this. Ian’s months of diarrhea and recent increase in vomiting have been linked to this virus and the idea that he has had it for three months.
After speaking with several of the doctors, they have never known anyone to test positive or hold-on the norovirus for that long..... 4 weeks was the maximum. This is what we most likely ALL HAD back in January. The virus usually runs a 1-3 days course and has a 1-2 day incubation period. The symptoms are vomiting, nausea, headache, joint aches, fatigue, and watery diarrhea.
This virus is common among “close settings” such as dorms, camps, nursing homes, and...... wait for it...... HOSPITALS! Most likely, Ian picked this up when hospitalized for the nosebleed in January, or when visiting CHOP as outpatient to see Dr. Blinman for feeding clinic or nosebleed/ hernia follow-up.
The bleeding is most likely coming from colitis.
The fact that Ian has had the diarrhea for three months certainly explains that his colon is “unhappy.” Unfortunately, there is nothing the doctors can do for it and it will need to run its course. The treatment is only for symptoms, such as dehydration and hypoglycemia.... none of which Ian is experiencing. He does not seem to be in pain and is not losing weight. In fact, he is gaining weight! He seems happy and jovial even though he finally threw up today for them.
We have had one bloody diarrhea diaper since being here and one vomit.... go figure. At least they have been able to see something. So there isn’t much they can do at this point other than to monitor for symptoms to worsen and cause problems with hydration. Unfortunately, this also means Ian is still under “room arrest.” Norovirus is highly contagious. I suppose since we all have had it, there is less risk of us catching it, again.
Endocrine Fasting Test
Hopefully tomorrow we can be discharge from GI’s care and moved to Endocrine’s floor for the insulin and blood glucose testing. We may or may not have to change rooms for that. Ian’s IV was able to come out tonight. The IV needed for the endo test needs to be a new one that has never had fluids flushed through it, and needs to be able to draw blood. They were going to need to give him a new one anyway. He may or may not need a second one, depending on fluids. Hopefully, the saline hydration fluids can be given through his G-tube and not through a second IV.
This is an example of the testing Ian will have. It test for elevated insulin and possible insulinomas that might throw off blood sugars. Thankfully, the Metabolism screening for Fatty Acid Quantification that was done included LCHAD... which is a fatty acid metabolism defect that can sometimes be passed recessively through HELLP syndrome, which occurred while I was pregnant.
The fasting test will watch to see what Ian’s blood sugar does when essentially starved, to make sure he can use reserves to help buffer and provide glucose to stabilize his own blood sugar. If I understand correctly, this will indicate if there is a genetic insulin problem that is contributing to Ian’s blood sugar hypoglycemia.
If all of this provides normal results, there is essentially no risk of hyperinsulinism problems. Fortunately, CHOP is the #1 program in the country and the only Endocrinology Attending Physician is ranked #1 in the country as well. If there is a problem, they will find it!
Once Endo has finished with Ian, we will be able to go home. His fasting test will most likely be 18-36 hours. He may not be given a glucagon stimulation once the blood sugars drop. They will also be drawing blood almost every hour for glucose testing and to look for ketones.
We are hoping Ian’s only insulin problems are the post-prandial hypoglycemia from Late Dumping Syndrome that were exacerbated by the gastroenteritis, creating what is called ketotic hypoglycemia.
Ketotic Hypoglycemia’s first episode can be attributed to severe gastroenteritis infection, which Ian clearly had, or may still have.
Finally, earlier today, the G tube Nurse Practitioners came in to “size” Ian for a new button. His AMT MIMI ONE is currently a 12 French, 1.2cm size. We have been getting some leakage and irritation.... a sign that the button might be too small. Ian now ha a longer button, 1.5cm. The French, or diameter if you will, of the button is the same. Essentially, his button is longer, but not any bigger around, so the hole does not need to be stretched or dilated to fit the new size.