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."
Sunday, January 9, 2011
Multivitamin trial....the rest of the story
Projectile, forceful, violent until emptied stomach contents...sigh....sigh...sigh. This reaction reminded us a lot of when he was reacting while breastfeeding (trace proteins in my diet were likely culprits some days) because he was up for drinking his formula (he always was a comfort nurser too) and we feel this really helped him as he seemed to be doing ok. Of course, he was tired but I wouldn't call it lethargic -- it's always hard to tell at bedtime because of course they want to sleep...it's bedtime and they just emptied the contents of their stomach...I'd be tired too. But, his breathing and color were ok, and he drank a good amount of formula before going to sleep. So, we were feeling it was a "minor" reaction (it was after all just trace proteins). That is until the loose stools/diarrhea started....and they haven't stopped. He was awakened 3x during the night for explosive diapers, and continued to have them all day Friday, but then they seemed to be starting to thicken up (he was eating really well on Friday). So, things were looking good- his behavior was good and his color still looked ok.
Things started to turn around nap time (what nap time?). He couldn't settle in to sleep and I spent half the afternoon just trying to make him comfortable enough so he could find that rest his body was needing. Little Man's daddy and I decide, we are done with the vitamin. This was a "minor" reaction, from TRACE proteins and he is experiencing all of the all-too-familiar-going-on-and-on reaction symptoms. Friday evening started to bring on concerns as his color started to look off. We got stool samples to check for infectious sources of his diarrhea and we attempted to get a lab draw. From previous lab draws around reactions, we have observed that he gets elevated platelets, and often has decreased leukocytes as well. And then, there is always concern for his hemoglobin and his hydration. No lab draw, all attempts failed and all we were left with was a very unhappy and tired little boy. Having difficulty finding a vein, and difficulty drawing from that vein are very typical for Little Man around a reaction, also very typical among other FPIES children (from what other mom's share)....this is one of the reasons why an immediate IV for fluids is advised- not only for hydration but also because of the affects it has on the body only makes it more difficult to find that vein needed to start the IV fluids.
We have learned another lesson about Little Man and I am prompted to push once again for more detailed needs specific to his condition to be in his chart....we should have gone to the ER with that vomiting. But it wasn't severe, and he drank right after....but his body needed that IV. But I have no doubts that doctors would have disagreed- his color was still good, he wasn't lethargic, he wasn't dehydrated looking, and he was drinking....we would have wasted our time trying to convince ER doctors not familiar with our son and his very rare condition, that the IV would help him. Unfortunately, this is part of the nature of this diagnosis. The unfamiliarity of it leaves the parents making choices and decisions on their own that would otherwise be better guided by experienced medical staff. Little man has had more minor reactions than full blown, we are fortunate in that he doesn't always experience full shock- his body has had times of shock symptoms and also acidosis but these are not immediate- only after days of "fighting" and his poor little body can't take anymore, does he start to exhibit these signs. Would the immediate IV help? The thought (and experience from other moms) is: yes,it does. But, again- you can't just show up in an ER and expect doctors to insert an IV on a child that isn't currently in shock, or even to the point of dehydration...yet. How do we change this for Little Man? How do we change this for all FPIES children?
Typical allergies, with IgE mediated immune response, children carry epi-pens so that parents/caregivers are enabled to help their children, while still seeking out medical assistance. Non-IgE (FPIES) children carry an ER letter that describes an full blown attack with the recommendations for an IV and maybe even steroids-- but so many times the attack stops by the time you get to the ER, or the attack is seemingly minor (although I challenge someone to watch your baby vomit as violently as FPIES kids do and call it minor- we have classified it as minor because we have seen, and heard of, worse). Vomiting 50x in one hour, and your child's heart stopping- that is worse, that is "full blown"....so my Little Man vomiting 4x in 15minutes until his stomach is empty and dry heaving but then stopping- that is "minor". But both scenario's need medical assistance, need the IV (and maybe someday there will be even better treatment options to helping stop the reaction) but for now- getting the toxin out of the body is the body's only defense mechanism. And maybe the IV not only helps with hydration so the body can re-coop better; maybe it helps to "flush" the system. It would be nice to know if this is something that would help our Little Man. We will look to try and get his chart updated, once again, to reflect his needs-- should this kind of reaction happen again; and given his history, it will....