Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Sunday, August 22, 2010
more Elemental Formula?
He was clearly a happier boy most of the day yesterday, his blood sugar was more stable and he was able to play without hunger feelings. He had some small initial signs that I was hoping would not connect/add up.
The hemp formula I am building him is low in carbohydrates, only supplying half his daily needs, as I am nervous about putting too much in (because of his carbohydrate intolerance) for a few reasons:
1. it makes it thick and then will he refuse to drink it? and
2. will he get diarrhea like he did from tapioca starch and make him sick landing in the hospital again; and then
3. I'm doing this on my own. The doctors here have not recommended it and they can't recommend moving away from an elemental formula. So, I have been 'testing' it to see if it will work for him- I calculate out every recipe, every ounce, to be sure he is getting adequate nutrition.
I am not taking chances with his health, I am looking for ways to improve it. Our Allergist knows we need to move away from the Neocate and has advised such. We have struggled with this because of Little Man's compounind carbohydrate intolerance. And, if something were to happen that he could not tolerate his hemp milk formula -- should he lose weight or get so sick again like he did on first attempts to build it (with tapioca starch that caused osmotic diarrhea and a hospital admission), the doctors surely will not help us move further on with next steps but will only want us to keep going backwards with the Neocate that we are so trying to move away from.
Why move away from an elemental formula that we know helps children thrive?
Here is one reason:
And an hour later....
Pick up your crying child you say?....
This went on for 3hrs this morning until I finally gave him some of his compounded ibuprofen (which we are to try and stay away from because of his "ulcer" in his stomach) but it is the only thing that helps with this kind of pain -- to at least give him a small break from the pain. Another sign of his agitation (besides that it does little comfort for him for me to pick him up except have a screaming child closer to my ear) is that he clings to things- he has to have things in both hands and will NOT let go...something to try and give himself comfort. This morning it was this piece of paper, and the cup...
If we ignore this, it gets worse- it moves to around the clock pain, difficult stools, mucous and blood in stools, screaming and sleepless nights, until he begins to refuse to eat (connects that this is what is causing the pain), and then if he starts throwing up or diarrhea on top of all of this....he gets so sick. This is the cycle we keep having with him and have been trying to move away from. We have been able to move away from it, with the hemp milk formula. When we see this agitation become a mere memory, we know we are moving in the right direction. When we see this agitation come back in full force with reintroduction of just 300ml of Neocate, we know taking it out altogether is the ONLY direction.
Each step I learn more....
I learned that he clearly needs more carbohydrate in his formula, and I learned that he clearly can not tolerate even trace amounts of the corn (glucose syrup or corn syrup solids).
The Hemp milk formula needs to be tweaked, with better carbohydrate ratio in his current formula, more vitamins to make it optimal and moving towards a tiny menu. This is the direction we are hoping the Peds GI doctor here can help us with tomorrow.