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."
Wednesday, November 3, 2010
I may finally have this, help....and a team that is not only recognizing and acknowledging his diagnosis for what it is but is anxious to help with the ill effects he has suffered from it. Amazing, truly amazing. This journey has been long and we are no where near at the end of the road yet but to have a TEAM will help assure Little Man stays healthier despite his FPIES and will help support my caring for him through it.
With the transfusion successfully behind us on Monday morning, we were able to have a great discussion with the new GI we arranged to have Little Man's care switched over to. Right away she was saying things that echoed my thoughts....much like we already have with our pediatrician -- someone who "gets" us, someone who hears and understands our concerns and uses that to help guide treatment within their knowledge and experience. I have had a drive to only include physician's that I can trust....this is a clinical diagnosis, trust is big. But clinical diagnosis aside, I have always felt this way about doctors. You should always feel a trust in the medical professional that you depending on to assist you with any illness....this trust comes into play deeply when you/your child is very ill and your focus goes to only their immediate needs and not their medical record. I need to be able to trust that the physicians caring for my children trust me, and I trust them.
The GI doctor and I talked about past reactions, she wanted to know details of which foods they were, time frames, anything I could tell her. Well, what couldn't I tell her? I have kept a log from April on, and I had pages of notes from before that even. I referenced back to this and I created a chart for her -- although it was 20pages long, I wanted her to know and see the patterns to his reactions....the "build" one's, the immediate ones, the questionable ones, and how we got to this point we are at now.....She loved it! It was exactly what she wanted, and the format was perfect for her own self-declared OCD! She wanted this list to help her understand MY perspective, not only what the many notes from the chart have to say but MY perspective that may not be included as well in the chart notes. She wanted these records so we could leave the past in the past and only continue to move forward but not forgetting where we came from so taking what we need to learn from the past and utilizing it but always moving forward. Little Man's health is top priority. My thoughts exactly.
Finding the source of his bleeding, or malabsorbtion, or what-is-making-his-iron-go-so-low "puzzle" is a priority for her. So, she orders a Meckels Scan to check to be sure he does not have a Meckels diveritculum that could be causing pain and blood in stools. After a whole day being NPO, the scan was finally done at 4pm and the results were read later - negative. He does not have a Meckels diverticulum. This was one of those times when that is both good news and bad news at the same time. Good news that he doesn't have it and require surgery to remove it; but bad news because it would explain something and it is something that they could fix right away! So, moving on....
The next test will be an iron absorption challenge. This will test to see if he is absorbing his iron in the small intestine the way he should be. We didn't go on to discuss a future scope but that would likely be next steps if this tests is also "negative". The great GI we saw last week (for a 2nd opinion/resource/support) agreed that he would recommend a scope as well as checks on his other vitamin blood levels for clues into his absorbption. I hope we solve that soon because last night, he had a diaper with blood in it. Barely noticeable and it actually was "negative" on the hemocult test (blood in stool) but it may have been a sample from outside of the area in the diaper where the blood was. The GI doctor and nurse last night both saw the diaper themselves. The GI doctor is calling him her little "puzzle" (again, echoing my thoughts!)....he has been a puzzle.
The key difference with her calling Little Man's FPIES a puzzle is that she isn't utilizing that to dismiss it but want to solve it more. She said she would call it "Atypical FPIES" in that his presentation and complexity is not the typical course (he didn't read the research literature). Maybe this is because his FPIES trigger is corn? Corn is in so many things, his body has been "attacked" off and on for so long. How much can one little body take?
Corn is where his FPIES was born, dairy is scary, rice was not nice. But soy - soy has always been questionable. Clearly his body was not tolerating it at the time and we did not continue it after a few weeks of symptoms that were adding up. But reviewing notes now, it could have been the corn syrup in the formula we were using, it could have been the rice he was getting at the time, or another food yet unidentified. Two of our other boys were dairy intolerant, but did fine on soy; they also both outgrew their dairy intolerance's. Discussions with Allergists and the new GI and we feel we have all of these things going for him; and the need for improved nutrition, and we're in the hospital in a routine by now....we decided to challenge soy!
A soy pass would open up a lot of windows. It is still a plant based protein, so the iron wouldn't be that much different than the iron he is getting now. But soy is in as many things as corn- so to not have to worry about soy would be huge. Preservatives and additives in foods, "processed on same equipment" foods, vitamins, legumes, and of course SOY! And that only includes food- what about all the non-food? Bath soap, toothpaste, crayons,....Ok, I'm getting ahead of myself because we are only 4hrs. in to his soy challenge but he has had 4oz. and is doing GREAT.
It has been a whirlwind couple days and I will have more to update on later but I hope things puts a little window to how things have been for Little man over the past few days....