Tuesday, October 26, 2010

In time for Halloween!

Here is a link to an article for the PIC organization I recently wrote in regards to fun Halloween ideas with little ones dealing with food allergies. Enjoy! http://www.facebook.com/notes/pic-protein-intolerant-children-foundation/halloween-for-kids-with-pi-written-by-board-member-amanda-lefew/169844073028410

Monday, October 25, 2010

And the carousel begins once more. . .

Time to get on with another food trial "ride"! The last few nights since we ended green beans have been QUIET and she even slept through the night TWICE in a row! TWICE!!!! Only cried out once or so and stayed asleep. Wow!!!! My big girl. . . Anyways, once we get a probiotic, we will trial that and then after a week or so of that, we will then trial our lovely rutabagas. This way I have plenty of time to get crafty in the kitchen. . . Currently, I am trying to order them, but apparently amazon doesn't like the idea of me ordering culturelle either. .  . perhaps Kirkman's and my mama gut have won out after all. . . I am nervous though because what if the allergist specifically chose culturelle because of the TYPE of bacteria and if the ones I am looking at on Kirkman's aren' the same, will we not get the effect desired? So should we try the culturelle for a couple of days? And just wait and see? The pork thing has me very unsure. . .

Saturday, October 23, 2010

Determination has set in. . .

So back to the grind-- trying to work out some new challenges for food without throwing another fail in there for B. Coconut yogurt is our goal for this week (homemade with an allergen free starter, of course) but the first recipe was a bust, so I will try another tonight or tomorrow.

In another week or so, we will be back to food trials. After much mulling and much research (felt like I was playing food chess!!!), I have decided that rutabagas will be our next food of choice. They are supposed to cook up just like potatoes (lots of recipe possibilities here!) and they have a great nutritional profile (http://nutritiondata.self.com/facts/vegetables-and-vegetable-products/2611/2). They also don't seem to share any food families of foods that we have failed (which is never a guarantee, mind you. B has some safe foods that are in the same family as some food fails-- we are just trying to tread a little more carefully right now) and are cheap and easy to find. Excellent! I already have a few recipes in mind to try--- rutabaga pancakes, rutabaga fries, some interesting variation on an eastern european dish, rutabaga gnocchi, a little pot pie. . . and the list goes on. I have also read on many baby food sites that these are an excellent choice for baby foods to intro between 8-10 months of age, so they should be fairly mild. If anyone is interested in joining me in my quest, I will be posting preparation and selection tips as well as recipes (and pics!).

I will update on the yogurt if we get results and stay tuned for rutabagas!!!

Friday, October 22, 2010


Well, after hearing from the docs today, the decision was made to pull green beans. The allergist said that we might be able to come back to it eventually, but to move on for now. So no veggies in our diet for now. :( The doc recommended trying some probiotics (already have my yogurt starter, so I am going to be brave tonight and make this stuff!) and maybe increasing her reflux meds, switching her to something stronger. I am most bummed about this. I know it isn't a big deal, I know it could be so much worse, but in a way, it feels like we are back pedaling a little, and it is frustrating. It just seems like we are back to where we were-- we can never really get in a good passing streak without having a sudden fail streak. So no new foods for this week-- we will work with what we have and change it up a little by adding the yogurt and hopefully that will help out the digestion situation.

I am trying to stay positive though and this is why. A year ago, we were so lost. DH was deployed, we were living halfway around the world, we had little to no medical support and B was doing so poorly with foods, having big, severe fails. I was facing heart surgery and didn't know what was going to happen, scared because I didn't know how my baby was going to survive if something happened to me (no formula for us). But the surgery went great, B eventually passed a couple of foods before we left Japan, and now I not only have my husband HOME (outside of work, of course!) but we have SPECIALISTS and they listen to us and WORK with us and B. . . well, she is thriving, even with the recent fails. :) We have come so far and have so many more resources at our fingertips, it is something to be so thankful for. Sometimes the new information scares me and makes me think back to how sick she really got at times and that I had no idea WHAT was happening, but for the most part, I keep hoping that the worst is over and that right now, well, we are stuck in the middle. Not where I want most to be, but not the worst place to be either. And I really really hope that soon, we can start moving forward again and hopefully, move past the middle and closer to the end of all of this craziness.

I will keep you guys posted for my yogurt endeavors! Hopefully this will be the key in getting her to move past some of these fails!

Monday, October 18, 2010

Not super concerning, but just keeping an eye on things. . .

Well, the hiccups have arrived. And the wet burps and the frequent swallowing. . . But they aren't awful. And there is a lot of gas, some of which makes her literally cry out, I am guessing, in pain. The beans are passing through whole, but they are a little tough so I am going to start cooking them down a lot more tomorrow AM. Sleep has been rough the past two nights, but not horrible (although I did just have to go in and get her again so who knows what tonight holds. . .). So some little things to watch for but not enough to end the trial or cut back. Hopefully it is all adjustment, fluke or some other such nonsense, like teething. (This kid will get more teeth eventually, I am sure of it! haha) Anyways, tomorrow's breakfast will contain FOUR green beans, so hopefully all goes well! At least she really likes them! She calls them "baby green beans" and then makes her little cutesy face.

Sunday, October 17, 2010

day two and we are still golden!

Day two and we are still rocking out with the green beans! And Bridget keeps asking for them! So tomorrow, we serve up THREE green beans (we are just going wild over here. Hahaha)-- they are about two inches in length, so chopped up, they are a little more than a tablespoon. Wish us luck! I am feeling really hopeful!

Hold your breath. . .

Day one of green beans. Our first "common trigger food" trial since squash (zucchini), and that one was a bust. Day one of green beans looked good though! She had one green bean (cut into little pieces) and really enjoyed it! Tomorrow we will do two, the next day will be three. . . and so on and so on. But I am, in a word, petrified. All common trigger foods that we have tried have been fails, and ugly ones at that. Three severe rice reactions, one severe reaction to sweet potatoes, and we pulled squash by day 3 because it was producing BLACK, gooey diapers. I didn't want to see what would happen if we continued. And of course, she reacts to soy through skin contact and in my diet, used to react to "heavy dairy" in my diet (no straight cow's milk, for instance) and failed several other "common triggers" on the patch test. But green beans were a pass with the patches and I am hoping that they are a pass orally. Our track record with common triggers is what has me scared. But we are going slowly and being super aware of any changes, and hopefully, I am worrying for no good reason!! She really needs another veggie since she can only have spinach a little here and there (gives her an AWFUL diaper rash, increased reflux and odd diapers (not really reaction ones, not really normal either). So wish us luck and hopefully green beans will be friendly every day, not just today!

Monday, October 11, 2010

Mini-trial. . .am I crazy?

     We are planning on starting B's green bean trial (yikes) on Saturday so that DH can be home for the first couple of days. B has reacted to EVERY common trigger we have tried orally and has reacted to most of the ones we patch tested for, except for dairy (allergist won't trial until 2.5 and in the hospital, so that is a ways off), chicken (I am too scared to try because her turkey patch was pretty miserable looking and in my vegetarian mind, poultry is poultry!), and green beans. I am a little nervous about these, but I am hoping that since she is a little older and we have been having relatively good food luck lately (aside from beef and pork), then maybe she will chow down and keep them down like a champ!

In light of this decision, we have decided to trial sorghum for only a few days-- starting tomorrow. Am I crazy? I hope not! B has done well with "alternative" pseudo grains in the past and I am hoping that this will make the trial an easy one. The millet tasted too much like the corn cakes that she still refuses so I thought I would try and work harder on finding a sneakier recipe for that one. I will post the sorghum recipes I use later in the week. A note that I have learned about sorghum thus far-- I have yet to find a recipe with sorghum as the only flour that freezes or refrigerates well. So far, it does not retain its texture. So I will report back if I find a recipe that proves otherwise! Wish us luck and here's hoping I haven't completely lost it! Haha. . .

Sunday, October 10, 2010

Missing Korn. . . and no, I did not misspell and no, I DON'T mean Masa!

While driving to the grocery store for some much needed evening snacks for my husband and I, I got a rare moment to listen to music other than Raffi or Sandra Boynton (set to music). It was, in a word, GLORIOUS.

I am a certified Music Therapist and although I haven't practiced since we moved to Japan, I still keep up with my studies and the profession and whatnot. But in that 10 minute ride to Big Y, I realized that I have in fact neglected a passive form of the therapy I so believe in and used to practice. I have not permitted myself to listen to my own musical preferences (outside of classical) in a very VERY long time.

I like rock music-- metal, alternative and indy in particular (some classic too!), and because I don't feel B should be listening to it (*yet*), neither do I. But I miss my music. When I got home, the 10 minutes of nice hard rock to the store and back made me feel so much more energized, relaxed and refreshed.

And so tonight I appeal to all of you parents, FPIES parents and otherwise--- we need to take a break for ourselves, too! We can't forget the things that made us who we were, even though we get so caught up in the everyday life of taking care of little ones and for many of us, navigating food trials, playing pass and fail referee, and living with that constant gnawing anxiety that goes along with the worry about something new making our LOs sick, yet again.

So tonight, I will be listening to and embracing a little Korn, a little Floyd, a little of the Pumpkins, and maybe a little Metallica (and maybe some others!) so as to regroup and maintain my calm, hopefully helping me to remain a calmer and more collected mama for my baby B! Rock on, FPIES mamas (and daddies)!

Check it out, if you haven't already!!!


Wednesday, October 6, 2010

Day one of Pineapple!!!!!

Still experimenting in the kitchen with millet and sorghum, so I decided to start pineapple today to give a little more time to the recipe "process." Happily, after looking at the sorghum flour at the grocery store, I think the flour we had was fine. Apparently, sweet white sorghum flour really isn't white! Hahaha. It is truly a little gray!

As far as the pineapple, day one went great! I thought that we would have texture issues because of her issues with other foods-- meats and avocado. She handled the pineapple like a CHAMP! I didn't puree it or shred it; I just cut it into tiny chunks and she gobbled it right up! It was the first thing she ate for breakfast! I am hoping that the rest of the week goes as smoothly as this AM did! She did have a little reflux flare this AM, but her nap and nighttime sleep has been great for today and all diapers are normal! Fingers crossed!

Monday, October 4, 2010

There is a country song about this. . .

My sorghum's gone bad. Or so I think. It is supposed to be white and yet it is gray, kind of gravelly looking AND tasting. I don't think I can subject B to this. Apparently, it is possible for mold to grow in sorghum and I am wondering if that is what I have on my hands. The cupcakes are cooling now and then I will subject myself to trying them. The millet flatbread is also almost done :). I live in a multicultural cooking house and I have a fairly limited cultural background. Hehehe. But alas, our cultural staple (all hail the potato!) is on our list of things to avoid, so B delves into foods from cultures other than her own and with these, she seems to do well. I have a lot of hope for this week's trials of sorghum (after I get fresh from whole foods) and millet. B always has done well with "alternative" flours and that is what we are trialling! I will post pics and new recipes as they come and as time allows!

Sunday, October 3, 2010

Food Math

Ok, back to square one! A fresh week, a fresh start, a fresh food trial! Tomorrow, we trial sorghum flour and in another 5 days (I am brave with the pseudo-grains!) we try millet. I blame peer pressure from all of you other babies having such beautiful success with it! ;) And so once more, food math begins.

FPIES recipes tend to make my head hurt at times, like I am trying to figure out some crazy, cockamamie food equation (If I do this, then I can't do this and this chemical reaction won't occur. . .but if I try this and this and this, can I really make something appealing out of three food products and sugar? Thank God for sugar! Hahaha). And then when you see the little muffins or cookies or whatever puffing up beautifully in the oven halfway through your baking time, you think "Yay!" and then when the timer goes off, "WTF?!!!!!!!"-- your beautiful puffy little treats are like little puddles of sweet smelling mush! (Some ingredients are super sensitive to heat and have a much lower boiling point, breaking down and turning into mush. And let me tell you, it is NOT fun to clean those dishes!!!)

So as we are trialling sorghum recipes and feeding them to B, we will also be attempting the cooking of millet recipes, hopefully finding a nice variety of millet successes for B to trial the following week and for all of you little millet graduates out there to enjoy! My main goal is to come up with a sandwich bread, specifically a sandwich bread that is CORN FREE. Now as you all know, corn is our happy ingredient around here, but I know this is not so for all LOs. And I feel like all LOs need sandwich bread (as part of my quest for a "friendly" but pseudo PB&J sandwich) just as all little ones deserve a cookie. So I am up for the challenge. . .are you, sorghum? And are you, millet? They seem like worthy opponents and hopefully they will play nicely with not only the other ingredients mixed in, but also with B's belly.

And as for the beef.. . we have kind of abandoned the beef. After a couple sleepless nights and days and much screaming during those sleepless periods, we stopped the trial. 24 hrs later it was as if a storm had passed and sleep was back to B's normal. However, no crazy diapers (except for one), no reflux symptoms and no vomiting. We did have some major gas to contend with (hence the screaming. You know, the tucked up legs kind?) but I have heard that this can go along with meat. We also had some texture issues-- the lovely gagging, cheeking food, spitting it out. . . So beef is not a fail, merely a "we'll catch you later" food for now. So on to the sorghum, to the millet and then to the (deep breath) green beans. Here's to a fresh week and a fresh start!!!!