Well, we are just over a week into the peanut butter trial (we opted to extend it due to general weirdness as mentioned in prior posts). Things might be (*might*) turning around! The amount of blowouts each day has gone down--- only two yesterday and only one so far today--- and no more black, coffee like stuff in the diapers. So that makes Mama happy! However, yesterday and the day before we saw increases in reflux flares. More reflux today but mostly in the form of the good ol' reflux cough (haven't heard that one in awhile! She had it CONSTANTLY as an infant. . .). Maybe things are settling down, maybe, just maybe, she will actually ADJUST to this food. If that is the case, I have a lot more hope than I have had lately. I feel that if her body can adjust to some foods, then maybe we are starting to grow out of at least SOME of this.
Here is hoping for adjustment, a turnaround and a happy future of PBJ sandwiches (which of course means I need to get on the stick and learn to make some pear jam. . . darned pectin. . . .)!
Sunday, January 23, 2011
Friday, January 21, 2011
The Latest from the PIC Board!
http://www.facebook.com/note.php?note_id=192442910768526&id=149795518371805
This is the first installment of three-- enjoy!!!!
This is the first installment of three-- enjoy!!!!
Thursday, January 20, 2011
Peanut Butter Woes and Wants
Today we are taking another day off from our peanut butter trial, in hopes that alternating days might help. No blow outs today, no clumpy black flecks in the diapers (they look like B ate sand from the beach in Zushi!!!), no reflux and a much happier girl (other than the tantrum she threw today in Joanns because she wanted to look at the "patter-ens." Crazy girl. . . ).
So we are waiting to hear back from the allergist for ideas about these mystery diaper invaders and trying to gear up for another peanut butter day tomorrow.
I hate to push it too hard but we kind of need this food. With no passes in the animal protein dept (other than fish-- hooray for fish!!!) and since we can't feed her fish everyday, we need some serious protein coming our way. The Neocate is kind of a bomb at this point-- she is hardly taking more than a sip a day. I even caught her "fake drinking!!!" Sigh. But happily, her rash looks much much better today (crazy diapers=crazy rash. She cried so hard during her bath!!! Poor girl). That is what happened the last day we took off of peanut butter-- everything resolved. We just need to figure out how much to push or if we are going to continue to push at all. . .
So we are waiting to hear back from the allergist for ideas about these mystery diaper invaders and trying to gear up for another peanut butter day tomorrow.
I hate to push it too hard but we kind of need this food. With no passes in the animal protein dept (other than fish-- hooray for fish!!!) and since we can't feed her fish everyday, we need some serious protein coming our way. The Neocate is kind of a bomb at this point-- she is hardly taking more than a sip a day. I even caught her "fake drinking!!!" Sigh. But happily, her rash looks much much better today (crazy diapers=crazy rash. She cried so hard during her bath!!! Poor girl). That is what happened the last day we took off of peanut butter-- everything resolved. We just need to figure out how much to push or if we are going to continue to push at all. . .
Sunday, January 16, 2011
Again with the Tom Petty music. . .
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!!!
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!!!
Friday, January 14, 2011
On the Eve of Peanut Butter
And so we seek to, yet again, enter the world of legumes. But since we have always been booted swiftly from this lovely world, I am a little nervous about the peanut butter!!! I am in no way concerned about an IgE reaction. But an FPIES reaction. . . .well, let's just say I will be double sure to have our ER bag in order. But on the plus side, IF it is a pass. . . WOW. What a pass it will be! In my mind, it is even bigger than fish (and fish was big!) because (A) She can have it every day (B) It will be a great way for her to work on some of her texture issues (issues with creamy stuff) and (C) We will finally break into the inner circle of legumes!
I am excited despite the anxiety. As a vegetarian and a mama with a big sweet tooth, I consume quite a bit of peanut butter, especially since giving up soy in my diet because of it bothering B through my milk. I am fantasizing about peanut butter cookies, peanut butter smoothies, peanut butter sorbet, FROSTING, fudge, cake. . . . the list goes on and on! Plus, if peanut butter goes well, we will try and squeeze in a chocolate trial before Valentine's Day and she can finally taste the beauty of chocolate peanut butter!
So wish us luck and I will keep updating the blog about our trial! Also, be sure to look for posts on FPIES freezer foods. . . hoping to make a little less stress for all of us mamas cooking multiple meals at dinner time.
I am excited despite the anxiety. As a vegetarian and a mama with a big sweet tooth, I consume quite a bit of peanut butter, especially since giving up soy in my diet because of it bothering B through my milk. I am fantasizing about peanut butter cookies, peanut butter smoothies, peanut butter sorbet, FROSTING, fudge, cake. . . . the list goes on and on! Plus, if peanut butter goes well, we will try and squeeze in a chocolate trial before Valentine's Day and she can finally taste the beauty of chocolate peanut butter!
So wish us luck and I will keep updating the blog about our trial! Also, be sure to look for posts on FPIES freezer foods. . . hoping to make a little less stress for all of us mamas cooking multiple meals at dinner time.
Thursday, January 13, 2011
Zofran Studies
A lot of talk has been going around about the use of medications during FPIES reactions, particularly Zofran. Here are a few links to articles researching the use of Zofran with little ones (infants, toddlers, preschool age). Just bear in mind that the article is not related to FPIES or allergies, but merely to cases of acute gastroenteritis being seen in the ER (like bacterial or viral stomach bugs). We are quite opposed to use Zofran for B's reactions (after a pretty horrible experience) and I think if you read between the lines and think carefully about the nature of an FPIES reaction for your LO, you may find it might not be the best choice to medicate with Zofran during a reaction. Enjoy the "light" reading!
Monday, January 10, 2011
Really, FPIES? Really?!
So it probably is in no way FPIES related but I blame FPIES for all allergy related issues in this house (FPIES started it!). And this is such a completely non big deal-- more of an annoyance really. Apparently, my B might be allergic to cold. COLD?! Apparently, her ped thinks she has cold urticaria. Whenever she drinks anything cold or eats anything cold, she develops these flat, very defined red spots all over her cheeks (they look like someone dipped a pencil eraser in pink paint and dotted her face). As soon as she swallows, they appear before our eyes. But they usually go away right after a meal, she doesn't seem bothered by them at all. . . And then there was tonight. Her lower lip swelled up about halfway through dinner, not huge by any means, but noticeable. It took about an hour to go away. I will contact the allergist in the AM, just to be on the safe side. I am not concerned but I do suppose it is noteworthy at least. The only new food is beets and she has no "symptomatic" response to them, so I am sticking with the cold theory. There can't be anything in the Splash that would cause this either, so we shall see what the doc says. I suppose my B got too accustomed to the warm breezes of Zushi? :)
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