Monday, September 27, 2010

Beef Day 1

Day 1 of beef and after 1 tsp at 9am. . . no unusual FPIES-y symptoms. Yes, she was a little gassy but I kind of expected that with the meat. Just a handful of burps and toots though-- nothing to write home about! SHe of course had some texture issues with the beef but I read her a few books and had her sip on her sippy for a little bit and most of what she cheeked eventually went down. Much trickery had to be involved to get it IN her mouth, but we succeeded! Tomorrow I will try 1Tbsp and see how that goes. I am really hopeful but at the same time, this is a food trial that has me doubting even before we start. I hate feeling that way, but you know how it is, you get to a point where you start to actually trust some foods but there are still others that you are very very doubtful will be friendly for your LO, even if you have no actual proof of this fact. So we will keep going of course, since today went so well. Here's hoping it will be a pass and we will continue our streak! Also, B drank 10 oz!!!!!!!!!!!!! of coconut milk from her sippy with her cookie snack today. That is monumental!!!!!!!!!! She has NEVER drank more than 2oz of anything from her sippy.

Sunday, September 26, 2010

Coconut is a pass, Beef is in our Future!

Coconut milk is an official pass AND I got B to actually drink some from a sippy today (I have been sneaking it in her quinoa flakes for the trial. Its just how I roll. . . hehe). I told her it was chicka chicka boom boom milk (you know, all of the letters go up in the coconut tree? Its one of her current fav books.) and it worked like a charm! It was only about 2oz, but really, that is HUGE for her. She still won't drink juice or even juicy water from a sippy--- only plain water. We will go slowly but we need to work her up to being able to drink 6 oz or more of something other than water from a sippy so that by the time she is 2.5, we can kick that dairy trial's rear!

So beef tomorrow! I am super anxious about this one. Because of how pork went for the oral challenge and for the patch test and because of my history with meat as a little kid, I am super worried about how she will do. We got the fresh ground beef (grass fed of course!) from Whole Foods today and tomorrow I will start with 1tsp and work our way up to 2oz by the end of the week. I am going to prepare it plain for the trial but if it is a pass, I will start creating some interesting combos.

On another note, remember our big quinoa dilehma when we started trialling it? Well, in case you don't, when we started trialling quinoa we were still in Japan and I couldn't find anywhere to get it. We had it sent to us and I started a three week trial. B had a lot of trouble with her reflux when we started it and had some behavioral and sleep issues, but it didn't quite seem like a reaction for us because even with the minor ones, you can always see the symptoms progress. These didn't progress, they just remained not so great. Well, one day I was reading the packaging and noted that it said the quinoa was processed on the same equipment as tree nuts. So I got to thinking-- what else could be processed on that line? Maybe rice? Maybe that would explain the reflux-- trace amounts of rice! So I called the company and they told me that the only thing prepared on the same line as the quinoa was wheat berries. Hmm I thought. That can't be causing her any trouble. . . .fast forward to today, almost two weeks post patch testing and her wheat patch, though it has stopped worsening and started finally healing, still looks a little rough. Now I wonder if the trace amounts of wheat were giving her issues. Here is the other piece of the puzzle--- when we got back to the states, I restarted B on quinoa but this time I used the ancient harvest brand. They ONLY make quinoa and some quinoa/corn products. No issues like there were before. Interesting, yes? I think there is a pretty good case for the trace amounts of wheat causing issues previously. Crazy cross contamination. . .

And finally, the last thought for this post. Our full-blown FPIES adventure has now been ongoing for over a year (I am discounting all of the craziness that took place BEFORE solid foods began)-- last September (around the 9th)--- was her first of the three rice reactions (vomiting, etc) and the first of 5 severe FPIES reactions. We have learned a lot in the last year but I am a little saddened that it feels as if we haven't come very far. It has been a rough year for B and a chaotic year for us as a family. I can only hope that this time next year finds us at a different place, maybe a place in which we will have outgrown reacting to new foods and only have our challenges remaining (9 from oral reactions, 6 from patch reactions). Here's hoping for moving forward and leaving a little bit more of this crazy FPIES behind!

Wednesday, September 22, 2010

B Takes Charge!

Typically when B is eating a meal, I have at least one finger food available to her and anything that needs to be eaten with a spoon, I encourage her to "take turns" with me (instead of me feeding her every bite, she feeds herself a bite every other bite or so.) Usually I have to scoop up the food onto the spoon, but she will bring it to her mouth when it is "her turn." Well, today she apparently had a new lease on life and decided that she was going to take charge of breakfast! I gave her the spoon when we sat down-- after she asked for it!!!--- and she started going to town on her pears, scooping them up in the spoon and saying "Mmm, tastes like ice cream!" since I give her the pears slightly icy and slushy-like (My silly girl who has never had ice cream a day in her life! Hehe). She scooped up her mango chunks and used her fingers for some of them. She even scooped up some of her quinoa flake cereal (hot cereal prepared with coconut and hemp milk, dash of vanilla and a dash of brown sugar) and also declared "Yummy brown sugar!" (I tell her the fun ingredients in her foods in an enticing way in my endless attempts to get this kid to eat.) She ate an AWESOME breakfast! There was no pleading, bribing or brain-numbing tricks needed to get her to eat. She ate her breakfast! And most of it, she fed to herself! The highlight was, of course, when she was bringing a spoonful of quinoa cereal to her mouth, accidentally dropped it on her hand and then proceeded to run her fingers up her cheek and through her hair. Ahhh, nutrients via osmosis. I couldn't stop laughing-- it was such a messy image and so funny! So I had to share my victorious AM with all of you! My baby B is growing up! *a little tear*

Tuesday, September 21, 2010

Day two of coconut is a go and B experiences Hemp Butter!

Well, day two of coconut milk went off without so much as a hiccup (literally!) and B got to taste hemp seed butter on her corn/quinoa muffin at dinner tonight. We called it "muffin sauce" since DH and I were eating pasta with "sauce" (as she knows it) and she seemed intrigued by the sauce aspect of the pasta. She took a bite but only a bite. She didn't seem grossed out by it and actually chewed and swallowed the muffin with "muffin sauce" but wouldn't eat any more. It's a start!

Monday, September 20, 2010

Who needs peanut butter anyways?!

As many of you fellow allergen avoiding families out there may be doing, we are also avoiding peanuts and tree nuts for a bit, at least until we get the ok from the allergist. The idea is to get B eating as many low allergen foods as she can first and then tackle the biggies once she has shown she can tolerate the supposedly more innocuous foods. But being a vegetarian and enjoying a diet that resembles that of a kindergartener, I am a self-professed peanut butter fan. Great source of protein, tasty, I can put it on ANYTHING. . . I digress.

I wanted peanut butter for B. But no peanuts for now, or nuts for that matter. I have read what seems to be every stinking label on various sunflower seed butters in the store but I keep coming against the same brick wall--- "processed on the same equipment as soy nuts." Soy is pure evil in our household, so we needed another plan. I got to thinking that I could just make my own. Easy peasey, right? Well, I not only have the diet of a five year old but also the patience of one. We are fairly booked with our food trials for the next few weeks and I simply did not want to wait several weeks to try sunflower seeds in order to make the butter.

I started to think that maybe, just maybe I could make hemp seed butter! But where on earth could I get those hemp seeds, I wondered? Surely no one in the US would sell such a thing, what with hemp commonly only associated by the general public with images of druggies and other such riff raff (sigh). And once more, enter Whole Foods! I heart you, Whole Foods Market!!! While strolling by the protein powder that my DH was checking out, I saw the big, sunny yellow bags of shelled hemp seed, otherwise known as hemp hearts!! Thank goodness for Canada and their hemp imports! I was so excited that I threw one bag into the cart without so much as a price check (I still have no clue as to how much I paid for this product).

So now, as I type, I am roasting hemp seeds in my blessed oven in order to create hemp seed butter before this night is over. The timer is almost up, so I must stop writing, but I had to share the excitement! If it is a go, I will post the results! It will technically be a single ingredient recipe, since oils and salt are considered freebies! Yay!

Sunday, September 19, 2010

On the Eve of Coconut

We trial coconut in the AM and I am excited! We are starting with it in the milk form and I am sneaking it into the hemp milk that I mix in her quinoa flakes for breakfast. Wish us luck! I also got a notice that my yogurt starter has SHIPPED and will be to our home soon--- I am ready to make hemp milk yogurt and hopefully coconut milk yogurt too (the store bought has that darn rice syrup in it! argh!). There is also coconut flour-- I played with it awhile back but now it looks like it will be time to revisit it. Hopefully some new recipes will come out of this!
B's rash from her patches is still pretty awful in the soy, egg, oat, wheat and turkey areas. I keep throwing on the hydrocortisone and keep hoping they at least start to improve!

Patches Update!

Well, now that I have a minute to spare between the muffins cooling and the diapers in the washer (blah!), here is a little catch up on our latest news. The patches were kind of a sad event for us. I know it could have been a lot worse but it was pretty bad, all in all. We took them off on Wednesday and immediately I knew there were a lot of positives. The most surprising of all were the egg and wheat patches-- egg looked AWFUL and the wheat looked pretty rough. Soy rivaled egg for the most affected area, but when B's patches were read, the allergist listed soy, egg, turkey, peas, peaches, oats, rice, sweet potato, apple, and pork as fails. The 15th patch was the control so that was neutral. The milk patch actually looked not so bad but I guess because of the other ones and because of B's history, the milk trial still won't happen until around this time next year, when she is 2 1/2, and it will occur in the hospital. The wheat, soy and egg trials will also all occur in the hospital but not until the patches come back clear. She will be retested with patches in 9-12 months from now. When we are able to challenge all of her oral fails, the challenges will all most likely occur in the hospital as well-- I am hoping maybe we can trial the minor fails at home when we are ready to challenge?

We did get the ok to go ahead and trial beef (looking for grass-fed), chicken and green beans, since those patches pretty much resembled the control. DH and I decided to hold off on chicken because the turkey fail was fairly prominent and since chicken is also a common FPIES trigger that we would consider similar to turkey. We will be trialling coconut (in the form of flour and milk) this upcoming week and then beef the following week. We will then trial something that seems innocuous the week after beef and then trial green beans following THAT week.

It has been a few days since the patches were off and the egg and soy have shown no improvement, the wheat area actually looks worse and the turkey and oat area are relatively unchanged as well. Most of the other areas of inflammation have gone away, but much of the areas that reacted are still pretty bumpy and sandpaper-like, even though some aren't so red anymore. I still cringe when I see B's poor little sad back. It looks like it hurts. We have been applying hydrocortizone in the AM and PM and I am hoping it helps.

An interesting note from our patch testing. . . B had a reflux flare up for the duration that the patches were on. Within 24 hrs of the patches being removed, the symptoms disappeared. No new foods were being fed that week and no new teeth were popping in. I find this very interesting. . .

Anyways, more work to be had with recipes this week so keep posted. By next Friday there should be some newbies!

Tuesday, September 14, 2010

A little concerned but hopefully it is just B. . .

Patches come off tomorrow and not a moment too soon! B has been super fussy and moody since they went on, wakeful in the night and crying out a lot in her sleep. I am hoping it is coincidental. . .maybe some mysterious little teeth are on their way? She is quite the chronic teether with no results for awhile yet. . . The patches look ok when I have checked them so we will see if there is any change in the AM and if not, they come off around 2pm tomorrow. Wish me luck--- you will all probably hear B's screams as I peel off the tape! I will post the results here when we get them. She has 15 patches which include most though not all of her known triggers, some common FPIES triggers that we have not yet done oral challenges for, and some meats and grains. I have some pics I will have to post later and surely I will have more in the next day or two.

On a different note, be sure to check out the latest recipe in "Recipes that Have Passed-- Part 2!" A recipe for a whole family meal--- yes, its true! You could actually feed your whole family with one meal, rather than cooking multiple meals! So long as no one is allergic to the other ingredients of course!!!! Also, I am going to test this recipe as a "freezer food," as I am a big big fan of this type of cooking. I will also be testing the cheese sauce with other casserole ingredients--- quinoa, polenta, and spinach for us, but I am sure that many other casserole ingredients that are safe for your individual little ones would be worth trying. Lately, I have decided to really push to come up with recipes for "the whole family." B is now a full fledged toddler and notices the differences in our foods. I would LOVE for us to have one night a week where we all could eat the same thing. Between B's FPIES, my (albeit mild) elimination diet, my vegetarianism. . . it gets a little kooky around our house for dinner sometimes. Also, with all of the household projects and fun things I have planned for B, I would like to come up with meals for families "on the go"-- freezer food recipes or crock pot recipes that are simple, safe and sensible. Really, there is so much about FPIES that doesn't make any sense, we should really try to make sense of the things we can in life, right? Stay tuned! I have a kitchen and B is pushing forward with food trials. There is little that can stop us now!!!!!!!!!!

Monday, September 13, 2010

An Update!!!!

Well, we are here in our new home and in a huge unpacking mess! So much to share, so much to catch up with! I have some new recipes to post in the upcoming days--- hemp milk mac and "cheese," and some others-- and some updates from B's own accomplishments. We have some new safe foods! Mango, boiled hemp milk and Daiya "cheese" have been added to the list! We are doing patch tests this week so no food trials until next week and we aren't quite sure what to do next. So far, B is miserable tonight but I think it has just been a rough day. We will see in the AM! More to come!