He was right. The waiting IS the hardest part!!!
Getting ready to embark on day 3 of peanut butter and still not budging from our 1 tsp "dose." Today, as happened yesterday, at almost EXACTLY the two hour mark, the reflux flares began. Nothing huge, but lots of hiccups, wet burps (the kind that make you do a double take?), and a couple of explosive FULL diapers with the acid ring. But no major diaper rash, though seeing the red ring of doom (thank you other FPIES moms for such lingo!). She was kind of droopy acting today and yesterday for about 50% of the time, and kind of fussy for the rest of the time. But she is a toddler, and a high maintenance one, so she is kind of typically fussy. She did seem to come unglued a lot more easily that usual, but still. . . Still, not enough stuff going on to stop the trial, even to take a day or two off. So tomorrow we push ahead, hoping for an adjustment, hoping the oiliness of peanut butter is causing the diapers, hoping for a pass. The neocate is not going so hot, so we really need to beef up the foods around here! This trial may end up extending past a week. I really want to do anything possible to make this a pass and if going slower than molasses helps, I will do just that!! If I can get her to have at least a day of improved symptoms or no symptoms, then we will increase the amount. If not, then we will stay at 1 tsp. Keep your fingers crossed for a pass! This waiting game is getting OLD!!!
Okay, can I ask....? Peanuts are a legume, right? And legumes are pretty scary for FPIES? And WHERE did you find peanut butter 'pure' enough to trial? I have considered this as we're in trouble in the protein department too, but I haven't found a good candidate yet....
ReplyDeleteYup, they are a legume and therefore scary. We just weren't left with much choice. At this point we have 20 known triggers (several meats are included in these) and we are really hurting for a protein source that B can have EVERY day at just under 2 years old. The fish is great, but she can only have it 3 times a week! So we find ourselves having to trial peanut butter.
ReplyDeleteAs far as the brand, I was very happy with the response I got from Teddy Smooth (http://www.teddie.com/)--- the only ingredients in the peanut butter are roasted peanuts and salt. And although another peanut butter containing soy lecithin is produced on the same line,they clean and test for trace soy before running the peanut butter B is eating. We also did two at home skin tests with the peanut butter-- B has reacted to tiny tiny amounts of soy in skin products so I was fairly confident that if the soy was a problem, she would react on her skin. No issue! And it was on for 4 hours!!!
So now we wait. . . I am very divided as to how the trial is going but I am trying really hard to be hopeful and just push through! Wish us luck!