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."
Thursday, August 11, 2011
Reaction, Infection, Nutrient Deficiency?
Right now, with so many other things ruled out. This is where I am at too. He either has some nutritional deficiency or he is reacting to the new probiotic.
With the Kirkman's probiotic, he tolerated the Lactobacillus strains but every time I tried to do a bifida strain, he would get a fever or flu like symptoms. An exchange with Dr.J and she advised to stick with the one strain for awhile, that his body was not ready for more yet. That was a few months ago, realizing that healing takes time but we've been stuck lately so when it was suggested we try a new custom probiotics; I thought it was worth the try as well.
We've been getting fluctuations of symptoms- symptoms can happen when starting a probiotic, especially if there is severe dysbiosis of gut flora, like little man surely has. I tried to increase the dose and he had a bloody diaper so I backed off a week ago, now today- this morning- he had blood in his stool again. My suspicion of the probiotic grows...
I called the "bug guy" tonight as soon as I got home from the hospital. He reports that his probiotics are clean, no added/inert or cultured ingredients. My question is: is he reacting to the ingredients (unknown) or is he reacting to the bugs itself? The "bug guy" feels it is the probiotic- that his dysregulated immune system is not handling these (tiny) doses. His advice is to stop probiotics for 2 full weeks, or more. If symptoms improve, we can assume he was reacting to the probiotic bugs- and to build him up MUCH more slowly...dissolving the same dose I have been giving him in a cup of water and then only giving him 1-2tsp from that cup/day. It is something to consider but have to admit, I am nervous....
Labs are initially coming back: Hemoglobin is dropping fast, now a 9.6 (last check was 10.3); Sodium is a little low but he's been sick and didn't drink well today; his chloride is a little low- probably for the same reasons his sodium is;his LDH is high but I am not really sure what that means yet. His total protein is low but not sure what that means as his Albumin is ok- although falling. So far, everything else is ok- but we are waiting on some more nutrient ones...especially B-12. (sorry if this doesn't mean anything to some but wanted to share for those who know what it all means). We'll have more insights tomorrow when more are back and we can step back and look at the picture.
My head is still spinning...I do everything I can....he is more and more allergic, his responses only getting worse. I know very well he needs micronutrients that he is missing for a strong immune system, a strong body- but if he is given foods that his body rejects, he becomes very sick and is set back even more. How do I get him these missing nutrients?
We are once again trapped, between a rock and a hard place. Trapped in evidenced based medicine and objective data with a clinical diagnosis based more on the subjective individuality of the child's own specific responses than any book can teach.
Little man is teaching, and his doctors are working hard at trying to understand his body, but there is just not enough known about the common mechanisms of this disorder to fully understand all the branches it takes off as. We are thankful our trip to CHOP is fast approaching. We are more-than-words-could-ever-express grateful that our good friends are loaning us their RV (again) so we can go as a family...staying together thru this is important to us.
We discuss TPN with our Pediatrician. We aren't sure what to do. Could he use some complimentary nutrition right now? We already know he could, but he is holding his weight, he is eating, he got IV iron today, and all his nutrition labs come back all within normal limits- he is not being "malnourished"...his nutrition is not ideal. I KNOW that, I have always known that. I would give my legs to feed my child, to nourish his body without it hurting him.