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, April 28, 2011
Coconut is a functional food. It is a prebiotic- food for probiotics. Coconut is a natural anti-fungal. Dr.Jyonouchi has said an anti-fungal (Nystation or Diflucan) helps some Protein Intolerant children when starting a probiotic. How does it help? I have not had time to fully research yet as I do like to know the what's and why's of things- especially since we are getting conflicting recommendations from his doctors. Our trusted GI doctor is worried about doing Nystatin prophylactically with concerns that he would not tolerate it. A valid concern. Dr.Jyonouchi often prescribes it prophylactically. With e-mail discussions with her, it sounds like it helps control the fungals (the "bad" gut bacteria) while the Probiotic (strengthening the "good" gut bacteria) does it's job. It helps even the playing field in correcting the dysbiosis. I have also heard of many kids having success with doctors who also prescribe an antibiotic during this "reseting" time. An antibiotic can kill off some "bad" gut bugs, but it is more detrimental to "good" gut bugs. But with the right combination of therapy, in particular if you know the gut flora of the child, it can help with the dysbiosis.
We are worried he will react to Nystatin. He is having problems with the probiotic- it plateau's throughout the day- when given, it has an almost immediate effect but we are seeing it wear off 4-6hrs. later. I did try and give it to him 3x/day but it seemed like too much? So, it seems, what he needs is something to help it- something for it to feed off of so it can reside a little longer and have "strength" to do it's job inside his intestines, alongside the resident gut flora. I decide to go back to coconut. He needs something.
He's been fussy that morning, so he sits on the counter while I made some coconut milk, with intentions to put a little in a few of his bottles (maybe the one he takes around the probiotic dose?). He is asking for some of the coconut manna (a coco butter that is the "meat" of the coconut and can be melted down for various things). I give him some coconut manna on a spoon- he loves it. "Yum, yum, more, eat". Nothing makes my heart sing more than hearing him say that, as I watch him enjoying a food -- especially if it is a food that is safe. He lays down for a nap shortly after that and when he wakes up, he has a fever and his cough is progressing, he is whiny and clingy. He doesn't have any FPIES symptoms, just increasing of symptoms we were beginning to see. I don't feel it is from the coconut proteins but did the anti-fungal components of coconut push him into an extreme "die off" reaction from the probiotic? It is possible.
Dr.Jyonouchi has spoke of her experience of probiotics having an effect on upregulation of the immune system in protein intolerant children. Which, from what I understand is the same thing as what is referred to as "die off" in complimentary medicine. The immune system is activated because of the "toxins" - by products of "bad" gut bacteria breaking down and being released into the blood as they are broken down and leaving the GI tract. The various effects of what happens as these toxins leave the body is different in each person (and parts of why this term is not recognized in medical terms as these effects can varied and difficult to point to origin of gut bacteria)...those that live it, see it from a different perspective and many times it takes experience to really help us to understand something. In a well functioning body, these toxins leave the system almost un-noticed, or with only slight ill effects. In a susceptible person, the effects can be intense. FPIES children (Protein Intolerant children) have over-reactive immune systems. Food is perceived as toxin, even gut microbes can be perceived as toxins in the gut. Now, with probiotics that cause bad gut bacteria to breakdown, we send toxins into the blood; where the body is recognize and attack these toxins....and in FPIES case, over-react in attack mechanisms. It has brought on fevers with Little Man in the past as well (with introduction of bifida strain, with reactions to foods). His experiences are teaching me....
The next day was his IV iron therapy. By this time, he has decreased his drinking and his fevers persist, he is getting dehydrated. I am the one to take him to the infusion center for his IV placement and to start the iron. I hold him while they search for a vein to insert the IV in. In his arm they go, under his skin, and the vein jumps away/shrinks. The poke around a little more. He is screaming and crying, but I notice he is not as strong as he usually is. This makes me more sad than the pain of the needle he is enduring, he doesn't even have the strength to fight me. The phlebotomists were very gentle and sweet. They stopped trying in that arm but wanted to give his other arm a try. He needs this iron, he is tired and weak, and spiraling. I know he needs to endure this little bit of pain for a bigger purpose. I hold him while they try the other arm, and get it in. So relieved. IV iron is infused. We did IV Iron Sucrose for the first time. IV iron sucrose is the typical administration of IV iron, but sucrose is corn. Dextrose is also corn but it is broken down an extra step. Previously we had used IV iron dextran. IV iron dextran takes 6hrs. to infuse, IV iron sucrose takes 1hr. IV iron dextran takes so much out of him. We do not know if the corn product in the IV affects his corn allergy, we do know he needs the iron and that oral iron supplementation was too hard on his intestines, and he was not tolerating it. We have to do IV. FPIES is a T-cell mediated response. T-cells are everywhere in the body, traveling through the lymph system. So reactions to allergens can happen on the skin, and even in IV. The risk outweighs the benefit and we switch to IV iron sucrose.
While he had the IV in, we requested he get some fluids to hydrate him. We have seen in the past that when dehydrated begins to set in, it spirals him quickly. His dehydration is not from an FPIES reaction, so we remain hopeful we can stay ahead of it at home. This IV of saline will help. We hope....