Ian had another great visit at CHOP today. We were able to get the results from the MRI last Friday. The MRI was to look for Arnold-Chiari malformation of the brain; a condition where the brain stem and cerebellum are intruding into the foramen magnum (large hole at the base of the skull for the spinal cord to travel through). This can contribute to neurological retching. Ian’s MRI was normal and thankfully, no Chiari was found.
While visiting the post surgical reflux clinic today, we discussed Ian’s post-prandial hypoglycemia. The goal for today was to do glucose testing. The glucose testing was not for a diagnosis of post-prandial hypoglycemia, but rather to test for how treatment helps. The dietician tried a large step in the direction of progress and wanted to see how Ian’s body tolerated the feeding.
Ian’s first test was a fasting blood glucose, goal between 70-120. Ian’s was at 108 and they were very happy. Ian of course was not happy! After being deprived of food for 7 hours and then being stuck with a needle, he was certainly demanding food! New glucose meters made it even harder. The lancet does not penetrate the same and they had a hard time getting blood to test from.
After getting a fasting blood glucose, we made the new concoction... This was administered over 45 minutes. When meals are this short, they are considered bolus feedings. Ian received 120 mLs, which is 4 ounces. The new recipe they were testing was similar to before, only with more Microlipid and the addition of pectin. The Microlipid is a fat substance (I call it fat in a bottle!) which slows down the intestinal tract and gives the body more time to absorb the carbs he is being given. It also adds calories. The pectin is exactly the same as the pectin used in canning. This ingredient slows down the tract as well and gives more time for things to absorb.
Ian needs more time to absorb the carbs and sugars because of his gastric surgery (Nissen Fundoplication). Ian has “dumping syndrome” as a result of the surgery. There are two types of dumping syndrome, early and late. In early dumping, diarrhea and sweating occur because the food entering the stomach flies out very rapidly. Late dumping, which is what Ian has, is actually a misnomer! It is not “dumping” at all and has nothing to do with how fast food leaves the stomach. The late dumping refers to blood sugar issues and is clinically termed post-prandial hypoglycemia, means hypoglycemia after eating.
As the dietician explained this to me, I could feel my head about to explode. She informed us that the post-prandial hypoglycemia has to do with a large elevation in Ian’s blood sugar after eating. I was instantly confused why it was called “hypo-” glycemia if there was TOO MUCH glucose! She explained that this “spike” in glucose/blood sugar (180 or higher), triggers GLP1, an insulin precursor to release large amounts of insulin. As these large amounts of insulin are released, glucose if rapidly depleted in Ian’s blood (leaving a blood sugar below 50).
Ian runs out of glucose before he runs out of insulin. The job of insulin is to uptake glucose and convert it into glycogen, stored in the liver, for future use. Ian’s insulin is working almost too much. When asked why the body doesn’t release enough insulin to take care of the current glucose needs and then stop, she quickly answered with “That’s what the problem with post-prandial hypoglycemia is.” She explained that sometimes manipulation to the gastric tract during surgeries can trigger this physical response and it is not exactly clear why, but it does resolve naturally over time. She assured us that Ian’s body would someday learn to do on it’s own, what we are doing for him now.
The treatment now is to avoid the “spike” in blood sugar so that the body does not reactively release large amounts of insulin an cause the blood sugar to drop. Over time, after some “happy time,” they will begin removing some of the additives and see how his body responds. Over time, his large rise in glucose after eating will no longer “over-trigger” GLP1 and stimulate large amounts of insulin to be released.
We are still adding corn starch to Ian’s meals, even overnight. It helps add some calories without hanging the osmolarity, or density, of the food. The purpose of its use during the daytime meals is to slow down the spike in blood sugar. Because corn starch is a larger chain dextrose sugar, it takes longer to break down and therefore, staves off the spike to some degree.
Over the 90 minutes, Ian’s body responded exceptionally well to the new testing meal and all of his blood sugar tests were normal. He had a rise after eating, and then a slow drop, followed by a small rise later on.
Immediately after eating: 149
30 minutes: 82
60 minutes: 77
90 minutes: 91
This is what they had hoped and we were given the clear to move on with a new feeding routine. Ian will remain on the same Peptamen Jr, with some water dilution. Now, he will have more Microlipid and cornstarch, and the addition of pectin. The reason these additives were increased is so the time can be decreased. Ian will now have 4 daily meals of 45 minutes a piece. This means he will only have to wear his backpack 3 hours out of the day instead of 10! This is huge!!! Ian will also keep an overnight meal. This will now run for 8 hours instead of 6, allowing Tom and I to get more consecutive sleep... we did not argue this!
The recipe is slightly different, but also serves to load him up with some more calories at night while he sleeps. He will now be receiving 8% more calories in a day than before. It is now 24 calories an ounce, as opposed to the 22 it was before.
Along with the feeding changes, Ian’s medications will change a little bit. Since he receives almost an ounce of meds in the morning, and this is when most of the retching is happening, they will be spreading them out and incorporating some of them into the food. He may also be able to come off the prevacid soon! Apparently, as the surgeon described, continual acid-blockage, from the prevacid, can contribute to chronic sinusitis!!! This is what was triggering most of Ian’s daily retching. Thanks to the course of Omnicef he just finished, that problem has resolved. We will be watching him closely to see if it returns. if it does, because of the prevacid, the meds will change and we will gain an ENT on our team. Since the Omnicef course, Ian has only had 2 retching episodes a week! It was 1-2 daily beforehand. Who knew acid-blocking medications could cause chronic sinusitis!?
Due to the end of the year complications prior to the Omnicef, Ian has not gained weight, but is remaining in a growth curve of acceptance. The antibiotic caused lots of diarrhea, and with having several Pedialyte only days due to such high feeding intolerance, Ian did not keep as many calories in as hoped; however, they are not concerned about his weight at this time.
On a side note, his button looks healthy and fabulous! They are happy with how he looks and no problems are noted in that area. Due to Ian’s very fair skin, the site is continually red, but normal. We are continuing the Benadryl to help suppress and relax the emetic (vomiting) reflex in the brain (vagus nerve). This has been doing wonders!
Ian’s demeanor lately has been wonderful. He is a happy little boy who is now running everywhere! His favorite new thing is stairs and is actually very good at them. He has learned to come down and much to my dismay, is now trying to do it on his own. He has started saying some words and has managed duck, ball, book, dog, and uh-oh. Duck was his first word. As ducks are my favorite animals, I was ecstatic!!! I should also add that it was watching Baby Einstein and in no way had to do anything with ducks I was “pushing” on him as an influence! ;)
Each night we have story time and we are both there to put him to bed. It is a wonderful happy time for us a a family. Most of the time, Ian seems to be content during story time and is nice and relaxed from his bath, and ready for bed... and so are we. Since Ian has been hooked to the pump, I snuggle with him until he falls asleep and then lie him down. When laid in the crib awake, he often plays with the tubing and chews on things! ;) Now, with his 8 hour overnight meal starting after he is asleep, we can work on him falling asleep on his own again.
All in all, it has been a great few weeks and we are finally starting to feel like what it is supposed to feel like it seems. Ian continues to work with a feeding therapist and has “graduated” from occupational therapy. His sensory issues are slowly resolving and our work at home and in feeding therapy is now sufficient! Hooray!!! I will make sure to keep everyone updated as the next weeks roll in.