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."
Tuesday, May 10, 2011
IV Iron Sucrose = corn
Little man has had IV iron Dextran in the past. Dextran is a sugar made of many glucose molecules. Sugars for IV (detrose, dextran, sucrose) are most commonly derived from corn. We have always seen some symptoms with these IV solutions, but never very significant. Nothing significant enough to over-ride his need for receiving the solutions. It is always a lesser of two evils approach. IV dextrose brought him out of acidosis following tapioca fail; IV nutrition healed his villus atrophy, IV iron dextran corrected his anemia. IV iron dextran takes 6hours to infuse. There is a shorter version: IV iron sucrose.
Sucrose is a sugar made of fructose and glucose molecules. So, it is a more complex molecule, that the body will still have to break down. But wait, he has a gut allergy- right? Yes, FPIES is a food allergy of the gut. The gut takes the "hit"- as if there were hives or eczema happening on the surface of the intestines, or anaphlyaxis of the stomach. But the mechanisms are thought to be T-cell mediated. T-cells travel through the lymph system. T cells are not limited to just the gut- that is merely where they are concentrated and trained to recognize for this type of allergy. But Tcells also respond to skin- look up Atopy Patch Testing. Also, read here: NonImmunoglobin E-mediated Immune Reactions to Foods by Dr.Spergel where he illustrates how learning about Tcells from Atopic Dermatitis patients has furthered understanding of this immune mechanism of food allergy.
So, dextrose is from corn, dextran is from corn, sucrose is also from corn (isn't everything?). IV iron sucrose takes 45min. vs. IV iron dextran's 6hrs. We know Little Man has symptoms from the iron dextran but we are suspicious that it is just draining to withstand an IV poke, followed by a 6hr.infusion. It takes him a few days to re-coop from that. We decide it is worth trialing the iron sucrose, to see if his body responds any differently, or at least see if the less time will be less draining on his system.
We move nowhere while getting IV iron- there are too many residual symptoms to know what is related to what, and it takes too much on his body. So any food trials we are doing, have to stop during IV iron. We are supposed to get it done two times a week, but with the 6hr.infusion, it is just too draining. A 45min.infusion may give us that 2x/week and get his iron restored so we can take those symptoms, and the anemia out of the symptomatic picture. It's worth a trial. It's always all about the trials.
Once again, he is fatigued during the IV placement, and lab draw- too tired to even fight me. We get through the 45min.infusion and come home to relax. I check his labs online, and see his hemoglobin is now up to 9.5 (from 8.5)! It rose a point with his previous infusion! I am thrilled, but wait....that means the recent fatigue isn't from the anemia? It's on the rise, a 9.5 is a GOOD hemoglobin for him! (normal range is 10.5-13.5g/dl). A look further down the list of CBC and I see his Leukocytes are low at 5.1 (normal range 6-11 x 10(9)/L) and his Platelets are high at 569 (normal range 150-450x 10(9)L). These are his "signature" post-reaction labs. Thankfully, they are only marginally away from normal range. They can indicate either inflammation or infection in the body. He isn't sick, but he is re-cooping from a mystery reaction.....now more clear, seeing these labs, it was a reaction- we just don't know for sure what to.
We expect him to re-coop nicely, following a rest on the iron infusion day....hoping his hemoglobin levels respond nicely again to this infusion. Instead - he continues to decline. Is he still re-cooping from the Saturday reaction? Maybe. But he is going on the wrong direction.....from bad to worse. Why? And why is he so sleepy? So fatigued? He seems flu- like, but isn't running a fever, has low muscle tone and is getting dehydrated looking, losing weight, and very pale. His diaper changes are green, slime, mucus, and blood specked, and very randic smelling. An FPIES family knows that reaction smell- the kind that you can smell from upstairs when he is downstairs! The kind that takes 8hrs.to clear from your house, even though you wrapped up the diaper and put it right outside in the trash. Yep, that diaper. But, how does that happen if the sucrose (corn) did not go through his gut? I suspect it has something to do with the involvement of the lymph nodes in the colon. At Little Man's first scope, lymphnodular hyperplasia was visualized, it has been clear on every other scope but I suspect this lymph system would be "processing" those recognized Tcells- and the evidence is in that diaper.
We hold him all the time for a few days- we contemplate bringing him in to see his pediatrician....we know there is little that can be done, and he is eating/drinking, and he's not throwing up, he's just so very tired. This is reminding me way too closely of his post-corn fail last July...and I'm getting nervous- when will he turn the corner? Two days later, with little change and no improvements, we try to get him scheduled with his pediatrician, and are unable to that day. We got an appointment for the following day, and his pediatrician shares our concern that he looks "punky" and not his usual self. He assures me his ears and lungs are clear, his breathing is steady, his blood pressure is stable. We just need to wait it out, watch him closely, push fluids/his formula, the TLC we've already been doing. He assures me he is on-call and wants to see him again if he does not improve.
Already he has been making improvements that day, so we are hopeful he will continue to make improvements everyday. Thankfully, he does. Each day has gotten better since then and by this weekend (Happy Mother's Day), he was finally talking, smiling and playing again. His energy is still low, and he's still re-cooping but making great strides the past few days as well. We have some ground to make up, as he lost almost 2# over the past few weeks. His appetite has been picking up daily, and he does well as long as his probiotic is in his formula (getting small amounts in every bottle).
Little Man's daddy and I are sure this downhill slide wasn't as much from the reaction as it was from the sucrose- a full body response- sparing his stomach and small intestine. We will not plan to do IV iron sucrose again. It remains to be seen if we will need to go back to IV iron dextran. We are hopeful to trial some meat soon instead. How about Bison?