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, September 16, 2010
Home from the hospital.
Little man, happy to be home from the hospital. He misses his brothers too much when he is there; and they miss him.
I haven't updated in a few days because we've been so busy, and worried, worried and busy- but mostly worried.
We've been working towards a baseline with Little Man, we moved away from Neocate and began to see what he looks/acts like when not in pain all day and all night long. Then, we tweaked his 'new' formula (the one I make in my kitchen with hemp milk and arrowroot starch) by adding hemp protein powder and we found not only a pain free little boy but a content little boy. The end of August, he was doing so well. The past few weeks he started to slide- he was cutting his 1yr molars so was a little fussy/whiny -but no where near the magnitude of his GI pain, so we were dealing with it day by day like any other "normal" teething kid. Then, he caught a cold his brothers were passing around- which brought him down a bit. Of course, all of this made me nervous- is this a build reaction or just "normal" 15mo. old everyday things? Gah! How crazy to be nervous over such little benign things! We pressed on, he continued to get millet puffs daily- he enjoys playing with them more than anything and we have intentions to do a full trial soon. I added the protein powder. Then we find out his hemoglobin/hemotacrit is falling- and his iron stores are already low. His iron has always been low- we (me) assume it is part of his malabsorption he had for so many months while on foods that were triggering his inflammation response. The hemp milk does not have ideal amounts of iron in it, and the iron it does is non-heme (meaning not from blood- so vegetarian). I have a 15mo. old on a vegetarian diet. He needs double the iron and good sources of Vit.C- both of which he does not get.
Walgreens was so helpful in compounding his pain medications, now it was time to move the possibility of a vitamin supplement to the top of the list. I had asked them over a month ago and they could not find a way to make a multivitamin compounded with the vitamins but none of his allergens. I spoke to them again, and we decided to just to an iron and vit.C supplement- both of which come in powder form so they knew they could compound this. We waited a week, their supplier was out of FeSo4 (elemental iron); they kindly suggested we try another pharmacy in town. We took it to the hospital pharmacy, it took a few days for them to order the FeSo4 and assemble the compound and then a day to let it "set" and finally, last Wednesday it was ready. I gave little man his first dose as soon as we got home from picking it up. I thought he had good energy right away, but then he had trouble sleeping that night. I attributed it to an off schedule day and more teething. The next day, I had to work so little man was home with his daddy- who called mid day to say he was on his 3rd nap for the day. Odd, could this be his body's way of resting and breathing. One could hope, right? Thursday night he had more disturbed sleep and Friday morning brought the mucous filled, reaction smelled, diarrhea diaper. "He's reacting!" Little man's daddy added, "he had that same diaper yesterday afternoon". Ugh! What? What is he reacting to? The iron supplement? Iron is constipating, why is my little man having diarrhea with mucous? Ugh! Is it the Vit.C? I had called right away and asked them to be sure it was corn free. "It's corn free" they assured me. I didn't think to ask what it was if it wasn't' corn....I will next time. We called Friday to ask them to check what the Vit.C WAS made from, they got back later that day -- tapioca!! Tapioca that he had such violent dumping diarrhea that landed us in the hospital in July? Tapioca, really? Who would have thought?! Or, is it build from millet, or is it build from the protein powder that has Vit.E derived from sunflower oil. Can little man tolerate this? Everything extra, everything we weren't 100% sure on was stopped. No more millet puffs, no more protein powder in his formula, no more Iron/Vit.C supplement. He remained sick all day Friday, we remained nervous and concerned- would he get more sick? Can his body really keep handling this? Saturday he ate less and was tired and cranky, I sent a stool sample that came back positive for blood. Ugh, again. Sunday he was so, so sick- but what do we do? The ER wouldn't' recognize what was going on, their recommendations would probably be something that his body is sensitive to. So, again- we wait it out...moment by moment with him, holding him and watching him closely. Monday morning we call the doctors. The GI doctor wanted his labs done right away, they came back by noon and revealed a very low hemoglobin/hematocrit....he needs to be admitted.
Monday was our 13yr. wedding anniversary. What a way to celebrate, a trip to the ER for a hospital admission with a sick, sick little boy. But,these are the times I am so very grateful for my husbands strength. He was at work but he came home immediately and took Little Man to the ER while I stayed home and made some more formula and packed (hey, at least we got to be together for our anniversary...sort of). Thankfully, by the time we get to the ER- Little Man had a good nap and was perked up. They agreed he could wait until he was admitted for a possible transfusion- but that he needed continued monitoring for signs/symptoms of anemia.
So, monitoring is what we did- while the doctors checked all differentials for his sudden decline in hemoglobin/hematocrit. Little man kindly made us a stool sample the next morning and then blood work was done. Blood work revealed his H/H are stable- so confirming that his body was coping and holding; his chronic anemia has enabled his body to know how to utilize his stores well enough to hold. His stool sample came back negative for blood, the intestinal bleeding has stopped. So, the signs of him having more energy and more smiles and less crankiness with these lab results tell us he may not need the transfusion just yet. We wait to hear the doctors recommendations, while we try to think of the best decision for little man's health. "He will feel better" is the benefit they tell me. This doesn't seem like the benefit outweighs the risk. Do I want him to feel better? Of course!! That pulls at my heart strings like nothing else!! But do I worry that he will have a transfusion reaction? Do I worry even more that someone else's red blood cells in his body will incite his inflammatory responses? YES! Little man's daddy and I talked it over, and we just couldn't justify it. We know that if he drops low again, becomes lethargic and "blah", and a lab draw would reveal a drop to 6 or below- we would have to strongly consider this transfusion, esp if he was containing to lose blood (intestinal). But we are not there yet and Little Man deserves the chance to let the supplemental iron build in his body. Upon that decision, after 24hrs of monitoring to confirm his body is coping ok, Little man was discharged and we headed home. A discussion with our pediatrician today, and a plan is made for his specific needs. We will have to monitor him closely, and food trials are certainly on hold. I have added the protein powder back in, and he has responded well to it. I think not having this extra protein boost (also has iron) for his body did make a significant difference in how his body coped over the weekend. We will keep millet out and we have added tapioca to his list of allergies on his chart. We are hopeful we have identified the "trigger" correctly and he will continue to improve every day back to his baseline (that he had for such a short time).
He is so sensitive, so fragile but at the same time so resilient, so amazing. And he has big shoes to fill.