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."
Wednesday, December 1, 2010
One step forward, 3 steps back...
This gut pain also has been happening after nap time. It's been increasingly occurring over the past 2mo. or so, we think maybe it is from his iron medicine causing an increase in acid and this acid is washing over his inflammation, preventing it from completely healing after reactions. The GI doctor recommended a trial of omeprezole to help with this - a proton pump inhibitor to take away his stomach acid to avoid having it irritate his intestinal lining.
Despite having this off and on pains, he has maintained a pretty good baseline for the past month. But now, we seem to be losing it. One day will be great, but the next will be bottoming out, followed by a rebounding, and then again a gutter day. The omeprezole was started last Friday, he had a bottom out day on Saturday but he also drank bathwater on Friday night, so maybe he reacted to that (citric acid in soap = corn), because by Sunday he was great again. Sunday night, 2nd dose of omeprezole and Monday was an excellent day; so we were hopeful that Saturday's gutter day was indeed from bath soap ingestion. Then brings on Tuesday and we are in the gutter again. Lab draw on Tuesday morning doesn't help- this always drains him.
Lab draw was for a CBC check, how is his hemoglobin/hematocrit holding after the transfusion a month ago? We did not expect the results we got. Little man has been doing so well, primarily good moods, even a weight gain and we get the news that his hemoglobin is falling again, down to 8 (normal 10.5-13.5g/dl for his age). He is on a twice daily dose of iron. He doesn't seem to be tolerating a second dose if given in the afternoon, so we have to try and get 2 doses in before his naptime. Unfortunately, we haven't been successful in that daily....and to add to that, he hates it so much- he spits it out if I don't get it back far enough in his throat where he has no choice but to swallow at least part of it. It's becoming a struggle, and a syringe aversion! But we know it is essential so we press on. Missing one dose would have this negative of an effect, than we may need a new plan. His iron stores have just been too low for too long and his body is not keeping up. Or he is continuing to malabsorb it since his duodenum is where iron is absorbed and that is where not only his inflammation are but his villous atrophy as well. I am still trying to process how/why this is happening- how we can't seem to get things on a good track for him.
Then, last night was day 4 of omeprezole and he was experiencing insomnia....awake, unable to sleep (and WIDE awake for most of the time) from 10:15pm-3:30am! Thank goodness I wasn't alone, I stayed up with him until 11:30, then woke up little man's daddy....I was so tired and he was no where near going back to sleep! We went back and forth but Little Man's daddy took the brunt of those shifts as I could hardly even stay awake and Little Man wanted his daddy's cuddles.
Symptoms of intolerance to this medication are building, and so is my worry about causing him more harm than good. He needs the help for inflammation healing, the last thing I want is for him to be in unnecessary pain. But, his labs also revealed neutropenia/leukopenia and tonight he has developed a cough (this happened after the 3rd dose of Prilosec 9mo. ago as well). He had the insomnia last night, and he has been hyperactive during the day (primarily happy but a tad hyper -esp for him!); his appetite is dropping and he has more constipated stooling. So far, this symptoms/side effects do not outweigh the potential benefit of intestinal healing. The most concerning though is that his hemoglobin is dropping. How do we give him iron supplement with a proton pump inhibitor? His iron is being absorbed because of the acid his stomach is making to absorb it....until now. We are once again, trapped in a viscous cycle....
We have a hematology consult tomorrow morning to discuss IV iron therapy; and a weigh-in and check in with the GI doctor. So, we hope to have some better plans to continue moving forward and break this cycle.
We gave him half the dose of the omeprezole tonight and I'd better get to bed if tonight will be anything like last night....