GI Appointment

First, you HAVE to congratulate this country girl for driving all the way down into the city all by herself in rush hour traffic! Yay me! LOL

Now about the appointment:
We really liked our new GI, Dr G. He was very nice, straightforward, knowledgeable about autoimmune gut diseases, and quick. He is quite familiar with our allergist, Dr S, and is more than ready to work with him as a team to coordinate Lucy's care. Dr. G made attempts to make friends with Lu, but was rejected as usual. I appreciate his efforts though!

Lucy weighed in at less than 25 lbs, which is over a 1.5 lb weight loss- which is pretty significant for a two year old. This says shes not getting enough calories during the day to maintain growth. I was pretty shocked she had dropped so much, I was expecting more like a 1/2 lb or so.

Dr. G said that given all of her issues right now- the Raynauds, rash around her mouth, busted lip sores, weight loss, and failure to tolerate large feedings- indicates that her stomach is inflamed and not functioning properly. He suspects this inflammation is from Lucy not tolerating her formula anymore.

In order to be sure Lucy will need scopes done to check the condition of her GI tract and confirm that it is indeed inflamed. If it is inflamed Lucy will no longer be able to drink her Neocate 1+. She will have to go onto what is called "modular formula". Modulars are individual building blocks of carbohydrates, fats, and proteins. We basically will have to build Lucy a formula by hand. It is highly unlikely insurance will pay for this type of nutrition and it has a STEEP STEEP cost. It will cost FAR more than the current elemental formula she is on now, which was around $1000 a month before we had insurance coverage.

On top of that there is no guarantee changing to modular formula will enable us to avoid a tube. The modular formula isn't tasty and there is a chance she will have to be G-tube fed to force it in her. So for now, the prospect of a G-tube is still looming overhead, but is not a reality in the next month or so.

And to add insult to injury, Dr G wants us to take Lucy off of the lollipops. We need to go into this scope knowing that if her gut is inflamed the sole culprit can only be the formula. Removing the lollipops is horrible. I mean, seriously, these things are Lucy's joy. The one thing in this world that she can have that is tasty. How on earth can I take them from her?? I don't know how to do it. For now I am thinking the best method will be to slowly wean her down and then cut them out. I feel like if we go cold turkey, she would flip out. Taking out her lollipops is torture.

That's pretty much our appointment in a nutshell. It wasn't easy information to swallow. Things are going to be complicated for a while in order to sort out this mess. I am not even certain what I am hoping for out of this. If Lucy's stomach isn't inflamed, it means her digestive tract simply isn't functioning - which opens up a whole other can of worms and also reopens the possibility of a G-tube in the very near future.