I apologize for the medical lingo and I tried to keep it in simple terms, but unfortunately, without the medical details, understanding Ian remains a medical mystery... Go figure!!!
Today we visited with the surgical reflux, post-Nissen clinic at CHOP. We saw the surgeon who usually works with the ‘troubled’ Nissen kids. I wish we had seen him 6 months ago! He reassured us that the surgery needed to be done, and that we made the right decisions by doing so. He also mentioned that more than 1 out of 15 kids seen at the clinic had the Nissen due to mismanagement, and never really needed it. That made me feel much better about Ian having his Nissen done.
He talked to us a lot about the things that could cause retching. He mentioned that it is usually never an allergy. Those kids give skin and stool indicators and Ian had none of them. He said it was on the list, but very low on his list. Other reasons are volume and food composition. He feels strongly that Ian’s food composition needs to be tweaked until it is perfect for him. This includes looking at osmolarity (richness) of the food, the kind of milk protein (whey is better and leaves the tummy faster) and fats (long chain triglycerides are best because they do not affect the vagus nerve). Which led him to his next reason.....
The vagus nerve is a very long nerve running through the chest and abdominal cavity. This nerve is wired to the nose, mouth, throat, lungs, tummy, ears, and all other upper body organs. He feels that Ian has a strong vagal affluence, meaning that his vagus nerve is extremely sensitive. Any cold, allergies, ear infections, and tummy troubles will immediately lead to nausea and produce retching, and will cause all feeding schedules to stink! By “poking” one of these, it “pokes” them all. Eventually, this will improve over time. It is also managed by the Benadryl Ian takes. Benadryl suppresses the vomiting reflex in the brain and calms the vagus nerve.
We also learned that preemies are famous for their blood sugar instabilities. He told us that someone born at 29 weeks has about 1/7th of the liver glycogen they should. This means that they are set up for blood sugar instabilities because the glycogen usually “buffers” the blood sugar levels. No one had ever mentioned that to us before! While the body has made up for the glycogen deprivation, the sensitivity to blood sugar variance remains the same and is worsened by the Nissen. He referred to it as Ian’s “sugar-stat” instead of a thermostat. The body continues to over-compensate and has extreme highs and lows in blood sugar, leading to vomiting, retching, sweating, and redness or paleness. He feels very strongly that a major component of Ian’s issues are blood sugar related.
Ian had just finished eating before we arrived, so in January when we follow up, he will be tested for blood sugar levels at certain times after a feeding to see the levels. Apparently only 10% of post-Nissen kids have troubled “sugar-stats.” Leave it to Ian to be one of them. ;) The doctor mentioned that the fact that Ian stopped retching on continuous feedings leads him even more-so to this. By buffering the sugars and stabilizing Ian’s insulin, the retching can cease by a huge majority. This would be done through what he called “formula hacking” and the right fats and sugars. Formula hacking is done by taking a food and then adding, diluting, and rearranging what is in the mixture.
When Ian gets sick and has a horrible time, we will be giving him pedialyte only to keep him hydrated and will need to follow up with them and follow whatever guidelines they recommend. His meals will need to change for a while when he is ill. He did tell us that other things can add to the retching, but that these were the big ones.
I was curious if Ian experienced hunger since he only gets such a small amount of food at a time, over a long period of time. He told us that he would not because his blood sugar, insulin, and energy is on an even keel all the time. But that as we went along and improved and moved toward giving bolus feedings, (larger amounts at one time) that it would return.
Once we find Ian’s “happy zone,” with fats, calories, and time of meals, things will begin to improve. His tummy is now only half the size it was before the Nissen and it does constrain the vagus nerve.
Our goals are to 1) minimize retching as much as possible, 2) have proportional growth of height to weight (since Ian is short and chubby he said) ;) and 3) get as close to possible to a nearly normal life! Mouth feeding is the long term goal and he did say that it would most likely take a few years to get there. We will move Ian to bolus feedings from continuous as time goes on as well.
He also took away the anti-spasmodic drug because he said it does nothing for what he needs. He told us that GI would really have nothing to offer us and that we should only have the clinic make changes to his regimen. In general, the new plan is to drop his volumes, and condense them by using the right sugars and fats... which he said were longer chain ones- polysaccharides.
When Ian has a bad episode, he said putting a cold washcloth on the face actually helps. This is an old-wives-tale that actually works. Apparently cold startles the vagus nerve and ceases the nausea... who knew???
We have a new “recipe” of making Ian’s food. We are staying on the same formula/ medical food we were the last 2 weeks, only adding different things. One of them is cornstarch! I had no idea, but cornstarch has the same long chain dextrose sugars that help the “sugar-stat.” The other fat we are adding will help lower the richness of the food and stabilize the sugar because it has different sugars in it and will also help his motility. It is also loaded with calories! He told us that if Ian’s blood sugar is one of the big problems, the new fat we have been adding WILL help... another reason he thinks the sugar is the issue... because Ian has been doing great the last week or so. The cornstarch does thicken the food a little, but not enough to cause problems.
The other change is Ian now eats for 6 hours instead of 7. That gives him 2 hour break between his meals instead of 1, leaving him with more “free play” without his pump. Rough-housing daddy loves this idea!!!
We will revisit them in one month to re-evaluate. If Ian has a bad week during this time, he also gave us a Rx for an anti-nausea medicine that works a little differently from the Benadryl. By using both, we can “double-tackle.”
We will continue feeding therapy and Ian has no restrictions on what he is allowed to eat by mouth. As long as it is voluntary, anything that produces a positive response is allowed.... apart from eating Cheerios off of the Target floor of course! :) Apparently sugars and fats “prime” the stomach for eating. So a spoonful of sugar really does help! The dental hygienist in me cringes at the thought of feeding Ian a spoonful of sugar... but a mom’s gotta do what a mom’s gotta do! We’ll see...
Finally, the surgeon told us that the retching quickly becomes a behavioral response. Kids will find that it gets them attention and begin doing it with non-anatomical reasons. He reassured us to be nonchalant unless things get really bad and to not let him run us around with retching.
** On a completely “non-retching” note, Ian is thriving developmentally and is giving us a run around all over the house. He is laughing and smiling and happy as can be. He is sleeping well through the night, He loves his bath-time and really loves when he can get into the shower with mommy or daddy and play in the water. He is working on teething again with his first molars and is chewing on everything!!
He is having a fun time with his occupational therapy and is doing very well with his sensory issues. He loves playing in the rice and beans and pasta shells at OT and is progressing onto “wet-sticky.” I don’t even like the wet-sticky, how can I expect him to like it? :)
We are getting ready for the holidays and the house is still for sale. I don’t think we will be going anywhere until the springtime. No matter what, we will surely have a fun time watching Ian play with all the boxes and ribbons!
He is such a joy, everyday, no matter what happens. I continue to feel blessed that he was brought to us, and will continue to work as hard as we can to fight for him. So far, it has brought us to the right place, over many many months, and we are on the right path now. These doctors are true gifts that we have finally found. The others in the past, some good, and some very debatable! The doctor today even told us we were smarter than probably half the doctors we had seen. He said they simply don’t know how to respond to kids like Ian... Well, finally, we have found someone with the same philosophy as our family! Hooray for a GREAT DAY!!!