Wednesday, December 29, 2010

Cross Contamination Worries

Last week was a huge victory!!! A big pass-- fish! Huge!! So I thought we would take it easy this week, before launching into another big trial scheduled tentatively for a few weeks from now-- peanut butter. Millet was up for this week and I thought-- this will be easy! Day one gave us an abnormal amount of mucous in diapers but I didn't think much of it. Day two was a little worse and B became more clingy and constantly wanting to nurse. Day three presented several mucousy diapers, with one being very little else other than mucous and food chunks (sorry for the TMI!). Reflux flares followed early the next day. I am suspicious.

Upon reading the packaging, the puffs are not considered gluten free, though the company says that it washes the equipment in between processing the "lower allergen foods" and the "higher allergen foods." But the lower allergen foods include rice-- a big trigger for us. But we have had reaction symptoms with cross contamination from wheat in the past, so I can't help but question the wheat as well as the rice. I am calling the company in the AM to get the production details.

Today we tried a different brand of millet and simply as the seed-- cooked with her breakfast. At one tablespoon, we seemed to do much better than with the puffs. Diapers were a little off but not significantly so, so I say we push through at least a few more days. If none of the original symptoms occur, then I will say that contamination was likely the issue and millet will proceed to a full trial, hopefully a pass!

Wish us luck! And curses to wheat and rice!!!!

Thursday, December 23, 2010

Happy Holidays!!!

Just wanted to say happy holidays to all! I hope everyones' celebrations are full of joy and free of ANY unsafe foods! We remain food trial free for the days surrounding Christmas and other holidays but it appears as if we will be adding (finally!!!) a new food to our list! The fish trial is going well-- very well!-- and I have a short little recipe to leave you with before the holidays! Enjoy!!

B's Tropical Treat Cod

1/4 lb wild caught cod, fresh or thawed
3 Tbsp canola
2 Tbsp mango juice (or pineapple, peach, etc)
1 Tbsp honey (or brown sugar or coconut sugar
1 Tbsp dried shredded coconut (optional)
Finely diced fruit (citrus goes well with fish, also apple or pear or peach)

Preheat oven to 450 degrees. Rinse fish and pat dry; set aside. In a small bowl, blend canola, juice, honey/sugar, and coconut with a small whisk or fork. Place fish in a small glass or ceramic baking dish and pour half of mixture over top. Turn the fish over and pour remaining mixture over top of fish. Cover dish with a glass lid (or foil) and bake for 10-15 minutes or until fish flakes easily when gently pressed with fork. For a nicer flavor, I baste the fish with the "marinade" (already in the shared pan) halfway through the baking time.  This is actually pretty tasty and will be our SHARED family Christmas dinner entree!!!!

Friday, December 17, 2010

Latex, has it worsened?!

What a crazy fall/winter it has been so far!!! We are going to start a food trial of white fish Sunday, trying to push it in before Christmas. But B STILL is not better, so we may be tempting fate. The croup got really severe two weeks ago Saturday and we just went back to the doc for a follow up this afternoon and now the doc thinks she has a sinus infection. She just stopped having coughing spells on Wednesday and still has an infrequent "junky" sounding cough. So now we have antibiotics to contend with and hopefully those will help. Over the last few days I have seen another reflux flare up and a pattern of questionable diapers, but no new foods to attribute it to. I am hoping that the virus and all has just made everything in her body go haywire, but who knows?

The latex issue. We got rid of all of the latex in her wardrobe and kept the laundry soap when her rashes on her ankles to knees and on her wrists just got completely out of control about a week or more ago. There was an instant difference in the first 24 hours and by 48 hours the rash was GONE and she only had dry skin. Stopped using the hydrocortisone (Rx) and have gone back to only aquaphor in AM and PM. Completely different kid! Completely!!! Her legs no longer look like a cat attacked them (she was scratching horribly all day) and she no longer is pushing her pants up to her knees and ripping her socks off every time I put them back on. We knew she was sensitive to latex (band aids were bad news and so on) but I am concerned that it  could be worsening. I am really really hoping that maybe some compounding factors-- minor food fails, croup, cold weather, original latex sensitivity--- have just made it "flare" up and maybe when she bounces back to a normal baseline, we will see the effects die down. Once these factors are all reduced, we will reintro the original socks and see what happens. Hopefully, it won't create problems again.

So hopefully we will find ourselves with a pass by this time next week. What a great pass that would be!!! We are certainly due and it would be a wonderful Christmas present to all-- if the week goes good, I might break my tradition of only giving new food in the AM until she has had it for a good two weeks or more so that we can all eat the same dinner for Christmas-- fish, quinoa, and fruit (not super fancy but how great would that be!!!) And maybe some spinach cake biscuits. . . .As for the fish, I will be making a mango and pineapple "sauce/marinade" for added flavor. Keep posted for details. . .

I hope everyone's week is filled with happy babies/toddlers and good experiences with foods! Eat on and bake on!

Sunday, December 12, 2010

Vitamins, Vomiting and Food Aversion. . . oh my!

That is what I am calling it--- being caused by food aversion more than a reaction. We are currently trialling the NanoVM multivitamin (though not really trialling-- supposed to be all safe ingredients for us since corn is ok).

Well, day one was last Monday and we mixed a half dose in with B's breakfast. Much gagging ensued after a couple of bites, and then complete refusal of her remaining breakfast. Day two, used good old trickery (All FPIES parents are masters of this-- you guys know what I mean!) to get a couple more bites in. And then began the vomiting. She threw up everything she had eaten already and then refused to eat anymore. Day three. Sigh. Desperate to not have B lose interest in food (a true concern at some points), I mixed it in with a sippy of water and tried giving it via syringe (this is how we get her to take the probiotic-- if we put it in her food, the gagging also results). She got about 1/2mL in before she was gagging and spitting it out. It is supposed to be unflavored and all of that, but it must have something strange about it. B is the syringe CHAMPION. She actually greets her AM Zantac with GLEE. Sigh. Took a couple of days off. Finally, I decided this. Something is better than nothing, right (another FPIES sentiment!)? So I am now mixing literally a dusting (I think it is about 1/10 of the scoop; the scoop is somewhere around 1 tsp- 1 1/2 tsp) into her quinoa flakes. She is still gagging, but since it is in a much smaller quantity, she just gags and doesn't work up to vomit.

So why post this? I know I needed to be reminded (and I am sure we all do at some point or another) that something IS better than nothing and B needs to be my guide rather than my little mental spreadsheet of food trial goals. The going may be long and drawn out, but hey, at least we are going SOMEWHERE. Here's to all of the little (teeny teeny teeny teeny) victories for our kiddos!

Saturday, December 11, 2010

Spinach "Cake"!

In our re-exploration of spinach, we have found that one ounce of spinach, every other day, is decently tolerated. Yay! Here is a new recipe that came out of the experience. I believe you should be able to use any vegetable that can be mashed or pureed for this recipe. You will need--- a safe flour, a safe veggie, a safe oil, sugar or honey, salt, baking soda and salt (if baking powder is safe, this can also be in the recipe. Should be ok without it though.)

Spinach Cake (makes 4 servings)
1 cup Masa (or safe flour. If using quinoa flour, oil is not necessary)
1 oz of pureed veggie (spinach for us)
1 Tbsp canola oil
1 Tbsp honey (or brown sugar. Coconut sugar will work as well)
1 tsp baking powder (optional)
1 tsp baking soda
1/4 tsp salt

Once above ingredients are all well blended, then add:
1/4-1/2 cup cold water
(Add enough water to make consistency like a light, fluffy, biscuit-like dough)

Preheat the over to 350 degrees F. Blend all ingredients except for water with pastry blender or fork. Slowly add in water until desired consistency is reached. Form dough into a ball and separate into four parts. Roll out each part of dough approx 1/4 inch thick. If desired, you can use cookie cutters to make shaped flatbread or you can simply make a pancake shape when rolling it out. Bake shapes or circles on an ungreased cookie sheet for 10 minutes (you can turn shapes over after first five minutes so equally browned on both sides.) Texture of bread will be light and biscuit like.

This is B's latest and greatest favorite breakfast food. She got all excited tonight because I told her that I was making spinach "cake" (she named it) in the morning. Give this recipe a try if you are trying to sneak in some veggies, looking for a little variation, or are needing to give veggies in really small amounts like us. She is still getting some of the food, just not so much of it that it gives her problems.

Enjoy!!!!! I am interested to hear what veggies you guys try with the recipe!

Monday, December 6, 2010

And then there was croup

It is official-- ped said she thinks it is croup. Blah! We got a steroid in case another night goes south (last night got very very bad-- in the middle of the night she was gasping for air, couldn't breathe. . . ) but I am hoping we won't have to use it. We have some alternative remedies recommended by the doc so hopefully we can have success with just those! There is an ingredient in the steroid that B has had a minor reaction to before, so we will only use it as a last resort. I figure we can deal with a minor reaction if it means B can breathe more easily. It is a much quieter night so far, so perhaps the worst is well over.

So for now, rutabagas are at least "tabled" and we are keeping the spinach in her diet, even though it is just in tiny amounts. As soon as she is back to her baseline for a couple of days, we will trial white fish. It is a biggie but I am very very hopeful about this one! When she was tiny, tuna seemed like one of the safest things in my diet for her. I hope that white fish (haddock or cod) turns out to be safe too! Then she could have a full little meal!!!!!!! And maybe we will get brave before Christmas and do a quickie trial of cinnamon. . . just to add a little flavor. . .

Sunday, December 5, 2010

Farewell, sweet rutabeggies. . . maybe

Well, she definitely has some kind of cold/virus-- at this point I am hoping it is NOT croup (sounds croupy). But EVERY (and yes, I mean every last stinkin' time) other time in her life that she has been sick it has been the week before a big reaction or immediately following major and minor reactions. Not to say that it definitely is this time, but we are suspicious. So no more rutabagas at least until this virus clears up and we aren't sure if we are just going to ditch them anyways and move ahead to white fish. This kid has got to get some more passes under her belt!! And we need some "big" foods and fish would definitely fit that bill. So we either try the tiny amount of rutabagas a couple more times and look for the same worsening patterns or we lay off the veggies for a bit in favor of fish, papaya, millet and peanut butter (!!!!). Then we will go back to veggies.

The good news is that the spinach reintro seems to be going well. She is still only getting very tiny amounts and on rotating days, but if she can tolerate this for now, maybe in a month or two she will tolerate more. I am really encouraged by her success with the little bits of spinach she has been getting. If it stays positive, then beet root will be our next veggie, as it is in the same family as spinach and quinoa. I already have little serving sizes cooked up and frozen in the freezer, just waiting for my girl to try them! I also extracted some GREAT dyes from boiling the beets-- golden beets and red beets-- that I am going to play around with this week. For those of you with dye sensitive kids, this may be worth looking into! Only for fun I know, but still--- safe dyes for sorbets and frostings! How fun, right?

Wish us luck getting into her ped tomorrow. I know B will be very happy if we can see her regular ped--- she lovingly calls her "Dr. Chocolate." I hate correcting her :).

Friday, December 3, 2010

Hoping for a Cold

Sitting here tonight and hoping that B is getting a cold. Strange I know, but you FPIES mamas will understand-- a cold is a better explanation that reflux building up to another reaction. She has had that dry refluxy cough today and yesterday and no other "cold" symptoms. . . but it still could be a cold! Nap was awful today-- tummy hard as a rock, she was screaming and saying "tummy-ACHE!" Finally fell asleep nursing two hours after I initially tried putting her down. She ate about 1/2oz of rutabaga in dumplings this AM (we have been doing our pseudo rotation diet). So we are now debating. . . what next? If we had a reliable veggie, I would be tempted to just pull it altogether, but we don't have one. We also reintroduced spinach this week but also in less than 1oz servings and baked into foods (we call it spinach cake and it is DELICIOUS. B thinks so as well!). The rutabaga seems to be causing the trouble but the spinach never seemed to be very friendly when we were trialling it this summer. It took well over an hour for her to get to sleep tonight-- lots of shrieking and discomfort. She is up again right now-- DH has her.

Not sure what to do next. . . I am hoping we all wake up in the AM with colds or something and I have an answer, a pleasant answer. I know the docs want us to push ahead but as DH said tonight, how many days and nights of this is too many? What is our limit? What is B's limit? Why should she have to keep dealing with this?

Part of me is hopeful that if we just push on, things will improve. But then how do we know that it won't end in a reaction until we are right in the middle of one?

Tuesday, November 30, 2010

Game Plan

I figured I should update with our new plan for food trials and whatnot.

I have decided that maybe (hopefully) rutabagas and spinach are like how pears and corn were for us--- it took forever for us to build up to full servings of each per day. So here is the plan: pseudo rotation diet. Day 1: tiny amount of rutabaga (less than 1 oz); Day 2: no veggies; Day 3: tiny amount of spinach (less than 1 oz); Day 4: no veggies; and so on. If this goes off without too big of a hitch after a couple of weeks, we will get rid of the veggie-free days and simply rotate back and forth between rutabagas and spinach, hopefully eventually working up to full age appropriate serving sizes. We are not really setting a timeline for reaching a full serving however-- just following B's lead.

The next part of our plan: going raw! No, no-- not totally, but the docs did recommend exposing B to a little bit of raw fruit each day, just to the point that she can tolerate. Going well so far with just a few pieces of pear and banana each day. Hopefully this will continue to go well and maybe we can increase the amount of raw foods she can tolerate over time!

Part three-- fats and proteins!! This month, we will be orally trialling white fish (haddock, most likely) and hopefully later on move on to salmon. Since B pretty much bombed beef, pork and egg (patch fail for egg), we are still on the look out for sources of protein that are also good sources of good fats. Fish seems to fit the bill so we will be embarking on exploring those new waters. We have also been given the green light to trial peanut butter, so we will trial that in January. I think I have found a good brand that does not seem to have any potential soy contamination, so hopefully that will go off without a hitch. Even if the only foods we pass in the next two months are peanut butter and fish, what an improvement to her diet that will be! We will also do a "homemade" skin test of peanut butter this month, just to be on the safe side before going ahead with the oral trial. If it is contaminated with soy, we will most definitely see it (she has had skin reactions to tiny tiny amounts of soy and soy derivatives in things). Also, the docs and dietitian want me to add a little canola to B's food-- the pasta mainly-- for an extra boost of omegas.

Part four! Textures! Again, docs and dietitian want B to incorporate more textures into her diet. So you guessed it-- I will be back in the kitchen trying to work on some new recipes for textured fun! I think the little bits of raw fruits each day will help, but the biggest thing for us to work on (IMHO) will be "creamy" tasting things, as B is super strongly opposed to these items. So hopefully I can concoct something good!

Other foods on the docket to try: papaya, millet, berries (either strawberry or raspberry or blackberry), beet root (golden and red), turnips, buckwheat. If she does well with peanuts, I may be tempted to test our luck with almond milk (I know, peanuts are not a tree nut, but if we passed peanuts, I would feel like our chances were better. . .) We also will be trying a multivitamin (NanoVM) and a new form of coconut milk--- So Delicious now makes a "yogurt" milk (think Kefir) that is free of dairy, soy, etc. but has prebiotics and probiotics. The only catch is that we can only get it in vanilla or strawberry flavor (no unflavored) and although B does beautifully with vanilla extract, she had some serious issues with the unsweetened vanilla hemp milk. Much less issue with the unsweetened original. So hopefully this will not carry over to the "yogurt" chicka chicka boom boom milk.

If we have not made enough progress by B's second bday, a scope will be strongly considered to rule out any possible issues and just to see what really is going on in there. We are free of going to see the docs until she turns two, so we have a little time to work on things.

And on a note of mixed emotion, my previously formula-free home now has Neocate Junior and Eo28 Splash sitting in B's cupboard. It was a very very VERY difficult conclusion for me to come to, but I felt like we needed to trial it and add it as a supplement in case the composition of my milk changes, in case I got pregnant or in case I suddenly could not nurse anymore for whatever reasons. We still haven't trialled it, but we will be within the next month. I have been dealing with a lot of doubt over this-- feeling like I somehow have let her down-- but I am really trying to look at this formula as a bridge, maybe something that will just serve to get us through a few months until she can have a substantial enough diet in order to wean. I am still all for self-weaning and will probably night nurse even after she has a better diet (unless she weans herself), but I think this will be a good back up and a good bridge for the time being.

And to end on a positive note. . . I will be trying the candy cane (corn free) recipe this week as well as experimenting with play doh recipes using alternative flours other than corn. I will be attempting it with quinoa, millet, sorghum and coconut flours. I may also attempt making arrowroot and/or potato starch finger paint. . . And of course, you can find the original play doh recipe under the page "FPIES safe kids craft recipes." A holiday tip--- use the play doh to make tree ornaments or gift tags! Simply make the play doh, cut out shapes (be sure to add a small hole for ribbon), and bake at 325 for 10-20 minutes (until shapes puff up). Thread ribbon through once shapes are cool, or paint with acrylic paint (add a sealant when done) before threading the ribbon.

Tuesday, November 23, 2010

Our Pear Pie

Was DELICIOUS, though a little runny (apparently this is the nature of pears and pie making! Who knew!) Here is what we did:

Follow the granola recipe except double the amounts of ingredients for making the syrup (honey, brown sugar/coconut sugar, oil). This should make enough for one large pie, bottom crust and top crust. Once granola is mixed up, divide in half and press one half into a pie pan. Bake at 350 for 8-10 minutes with aluminum foil covering the crust. When done, remove and set aside.

I used 6 large pears, peeled and sliced thinly. Added 2 Tbsp arrowroot and 1/3 cup of honey. Mixed until just blended and then poured into pie crust. Cover with remaining granola (can roll this out between wax paper or form into strips for the pie top). Make small holes with fork to vent on top. Bake at 350 for 20-45 minutes (check periodically-- time depends on thickness). You can use tapioca, potato or cornstarch in place of arrowroot-- just reduce amount to slightly less than 1 Tbsp in all.

DH was coming home late from work so I got B all ready for bed in jammies and all, and when Daddy got home, we all had a bedtime snack of pie and "milk" (chicka chicka boom boom milk of course!) It felt so normal I wanted to cry!

Happy Thanksgiving Everyone! I wish you all a beautiful holiday! Stay tuned for candy cane recipes (and they are corn free. . . )

Saturday, November 20, 2010

Quinoa Granola and modifications to the recipe

4 cups quinoa flakes (in mixing bowl)
¼ cup brown sugar
¼ cup canola or other oil
¼ cup honey
1 ½ tsp vanilla

Bring all liquids to a boil in a medium saucepan and then pour over quinoa flakes. Blend mixture well. Spread evenly over nonstick cookie sheet. Bake 12-15 minutes in a preheated 350 degree oven. For chewier granola, add more liquids and use half the amount of quinoa flakes.

*** To use this as a pie crust (I think it would be best for fruit or dessert pies rather than "meal time" pies because it is sweet-- I think it tastes like caramel corn), cut the quinoa flakes to 2 cups. You want to consistency of the mix to resemble that of a graham cracker crumb crust (crumbly yet moist enough to be able to smush ingredients into a pie pan and have them adhere together when cooking)

*** Pie Filling
This is a great resource for canning and other things but they also give a nice tutorial on making homemade pie filling.
If you want to simply play around in the kitchen and brave it without a recipe (B and my favorite style! Recipes are too limiting sometimes. . .), I would recommend having a thickener (cornstarch, potato starch, arrowroot) and lots of the fruit you are using for the pie. Remember that when you cook the fruit, natural juices and sugars come out, so that will help in creating a nice syrupy base for your pie. Sugars to supplement the pie filling could help the taste too-- I plan on trying coconut sugar, but there is also maple sugar, date sugar, good old brown sugar. . . the list goes on. I was amazed at how many options Whole foods had. I may even play around with honey, simply because I love honey. 

*** You could also make a fruit crisp simply by making a syrup with fruit and sugar and sprinkling the granola over top. 

Fall and winter festivities mean pies, so bring it on! Good luck, all of you FPIES and otherwise bakers out there!

Friday, November 19, 2010

Upping the Ante

Tomorrow we push ahead. The reflux has died down and the sleep has improved! Those are great signs! Still LOTS of undigested foods in B's diapers (sorry for the TMI) but her "standbys" are being digested just fine-- no signs of corn, bananas, pears, or quinoa. Just seeing a little mango and essentially all of the rutabaga. Since we have seen some lessening of symptoms however, I am increasing our rutabaga intake to 2 Tbsp tomorrow and will simply serve it mashed (I will chunk it and boil it, then mash it once soft). Hopefully things will continue to improve and maybe this will be the first food in B's history that actually has an adjustment period and not just something appearing to be adjustment that turns into reaction. That would be a HUGE milestone for her!!! :)

Since next week is a holiday, no new foods for us, but the following week I think we will approach and hopefully pass papaya. I think enzymes are what B needs to help kick some of these fails and I would prefer for her to have them in the form of a food if at all possible. I found  this great link that discusses using enzymes in foods on a rotation diet for optimal digestion. We would only use the pineapple and papaya ones but those seem like they would be most helpful in our situation anyways. Look for the paragraph that starts with "Dr. William Philpott."

As for next week, we have our big doc appointment at Children's so wish us luck! I am formulating questions now and will keep everyone posted!

Thursday, November 18, 2010


When I was still working as a Music Therapist, my jobs were always in fairly limited settings--- a maximum security psychiatric hospital, a residential psychiatric treatment center, an Alzheimer's unit. . . I learned to think in terms of what we COULD do instead of our limitations. Sessions were set up to challenge patients but also set up to promote success. When a teenager I would see in 1:1 sessions would approach me about learning how to play an instrument as part of his/her therapy, and I asked him/her if learning to read music or being able to play was most important, and I was usually met with a surprised look, but a relieved look. The goal was not learning specifically to play the piano or guitar or whatever, but to foster a longer attention span, to organize thoughts, to promote interaction, to promote frustration tolerance. . . and so on.

And here we are in FPIES, potentially looking at another fail, though I am still holding out hope for a pass. And tonight I have decided to gain a fresh perspective and take a breather. Tonight, I will say to myself, ok, what CAN we DO? We have a small roster of foods but it is something. It is time to focus on what is and has been safe and try to expand our menu without adding any new foods.

Next week, we will consult with the dietitian about ways to get the most "bang for our buck" out of what we DO have, and see if there is a way to avoid introducing formula when B turns two. I will be back in the kitchen with our fool-proof ingredients, and I WILL find new ways to use them, new textures to introduce, and maybe ways to improve the nutritional profile of B's diet, simply by using our foods in different ways. We have been contemplating adding enzymes-- maybe this will help B get out of this failure rut? And we will do our best to stop asking when she will outgrow this, or IF she will outgrow most of this. . . we have to focus on WE CAN. Hopefully, seeing allergist and GI next week will also give us some ways to move forward, some ways to move past these frustrations. Some new ways to say YES. . .I know many foods are not safe for her today, but I have to tell myself that SOMEDAY they really could be.

When at the store the other day, B was looking at some interesting-to-her food (don't remember what) and looked at me with her big eyes and said "Maybe one day will be good for you. Might be nice!" (She is at the age where "you" means "me"). One day, we will tell her yes. But for now, I need to create more to say yes to, even if it is only beneath our "safe food" umbrella. One day, hopefully more, much more. . . But today, we CAN do THIS!

Rutabaga Pancakes or Flatbread

1/2 cup Masa (or other safe flour-- wheat or millet would work well)
2 Tbsp mashed rutabagas
1/4 cup water or milk (we used hemp milk)
1 Tbsp honey
1 Tbsp oil

Preheat the oven to 350 degrees or a skillet to med-low heat. Blend all ingredients together until well blended--- should feel like slightly fluffy cut-out cookie dough. Form into a large ball and divide in half. Form into two "pancakes" and bake in oven for 25 minutes or in a skillet until cooked through and bread-like in texture.

I tried this myself with maple syrup and it was GOOD! B loved hers plain, however. One of these days we will try maple syrup. . .

Diddle Diddle Dumplings

B named these and absolutely LOVED them. These cook to be the same or similar texture as gnocchi (potato pasta dumplings). I think the recipe would work well with any mashed root vegetable-- potatoes, a firmer squash like winter or butternut, parsnips, carrots, or turnips. All you need is a safe one of these veggies and a safe flour. All other ingredients are optional. The most important part for the the success of this recipe is the texture of the dough-- once well blended, it should feel like firm cut-out cookie dough and should be easy to form into dumplings. If you have safe foods that your would like to stuff inside, this would work well.

Diddle Diddle Dumplings
2 cups mashed rutabaga
1/2-1 cup of Masa (or other safe flour)
1 Tbsp Hemp milk

Blend all ingredients well. If dough texture is not consistent with above description, add more flour or add more water/milk by the tablespoon. Firm, pliable dough is best.

Form dough into dumplings: Take small clumps of dough and roll out 1/4inch thick. Either place filling in the center and roll the dough around the filling so that it is completely sealed within, or gently roll the dough into an oval, football like shape. If using meat filling, cook the meat before filling the dumpling.

Fill a medium saucepan 1/2-3/4 full of water. Bring water to a boil. Reduce heat to medium. Drop dumplings in water (should still be slightly boiling). They should sink to the bottom initially. When they float to the top of the water and remain there for at least a few seconds, they are done. Remove from water with slotted spoon, place on a plate, and press the top of each lightly with a fork. Be sure to remove them from the water when they are done-- if you leave them in for too long, they begin to disintegrate. Each dumpling should be about the size of a gnocchi pasta. The dumplings cook fairly quickly.

Allow dumplings to cool and either freeze for another meal (flash freezing on a cookie sheet works best; once frozen, you can remove from cookie sheet and store in a freezer safe container or bag) or serve plain or with sauce (white or red sauce). The texture is very soft and B was delighted that she could easily pick them up with her fork, without them falling apart on the way to her mouth.

This recipe makes a lot for a little one-- be ready to freeze some of the dumplings or incorporate them into a family meal!

Rutabaga Fries

1 small Rutabaga, peeled
1 Tbsp oil
Salt to taste

Cut rutabaga into french fry shaped sticks using a paring knife or a crinkle cutter (pampered chef sells a nice one).

Spread fries out on a non stick baking sheet, spread oil lightly over fries with basting brush, add salt, and bake in a preheated 400 degree oven for 45 minutes. Check on fries periodically, as baking time can vary based on size of fries and how hot your oven runs. If your child can tolerate seasonings, add at your own discretion and to taste.

Veggie-Free Veggie "Burgers"

A non meat patty that can be used as a "burger" for kiddos who can't have meats and who don't tolerate veggies well, among other thing. Also free of the top 8 allergens, can be modified to be corn free, and free of FPIES common triggers.

Veggie Free Veggie Burgers:
1 cup quinoa
1/8 cup quinoa flakes
1/4 cup uncooked dry polenta OR millet flour
2 Tbsp oil
1 Tbsp honey
1 tsp baking powder (or baking soda + cream of tartar substitute)-- not totally necessary
1/4 tsp salt

Cook quinoa according to package directions. Once all water is absorbed, remove from heat and immediately add polenta (or millet flour), quinoa flakes and baking powder (or substitute). Blend well in saucepan (not on heat). Transfer mixture to a mixing bowl and add remaining ingredients, blending well after each addition.

Form mixture into patties (if they are not sticking together well, add a little more oil) and cook patties in a skillet on med-low heat until nicely, lightly browned. Serve by themselves or on flatbread with Daiya cheese (if peas are safe!).

Wednesday, November 17, 2010

I spoke too soon

Rutabagas may be very versatile for cooking but they are not in fact seeming to be very friendly. Like an hour after my last post, our rotten first night began. Lots of screaming, up and down. . . you know the drill. Reflux is flaring up again and she is being really finicky about eating safe foods. A huge diarrhea blowout this AM and some questionable diapers yesterday and earlier today. . . including the most foul smelling one we have had in awhile. We are still only at one tablespoon and I have given them to her boiled and mashed, in a rutabaga pancake and this AM as rutabaga fries (I even used my crinkle cutter!!!) I am so bummed that this trial seems to be going south but I really want to push ahead, hoping that we can start passing some foods again. It seems like she is cycling down again into her fail cycle and I was really hopeful that we would outgrow that.

Monday, November 15, 2010

My little Rutabeggie

"Makin' rutabeggies!!!" she exclaimed as I chopped them up. . . So far, so good. She wasn't super crazy about them (mashed and mixed with pears), but she ate one tablespoon. And tomorrow we go to 2 Tbsp baked in a pancake. No weirdness so far, a little residual reflux (I think from the omeprazole), but nothing to write home about. Wish us luck for tomorrow!!!!!

Take it away, take it away. . . take away this ball and chain. . . .

A little Social D to get us started!! Well our "ball and chain" omeprazole has been taken away and we don't have to retry it again! Hooray! We were on a teeny tiny dose for this time around and it was still increasing her reflux a little and causing some issues with malabsorption. So now we can jump back in to the food trials, happily, and hopefully get some veggies under our belt. I am a vegetarian after all-- my kid has GOT to eat a veggie or two!!!

So this AM we started rutabagas, also known as "wax turnips" and "swedes." For rutabaga preparation, here is what you do. In selecting the rutabaga, you want to select one that is heavy for its size. I found other rutabagas similar in size and weighed them in my hands to find the one most dense. These are veggies that are really waxed up at the grocery store so it is super important that you remove the skin. You want to wash them of course before cutting. If you are really freaked out about the wax, I found that you can wash them in a bowl of water with a couple spoonfuls of baking soda mixed in. This is helpful in removing pesticides as well as wax. I used a sharp knife and cut off thick pieces of skin, leaving the somewhat peppery smelling, whitish-golden flesh exposed. I then cubed it and boiled the cubes, just as you would with potatoes. I let them boil until they were literally starting to fall apart in the water, drained them and mashed them. I scooped out 1 Tbsp and mixed it in with B's beloved pears. The rest I set aside for tomorrow's trial-- rutabaga pancakes! (Think potato pancakes!) I had a pretty big rutabaga, so I only used half of it for B (and I know there will be a ton leftover!).

With the remaining half, I cubed it as well and then decided to roast it. I love roasted potatoes so I thought-- why not this? After searching around online, I combined a few cooking suggestions and decided to add a few tablespoons of oil (I had 3 cups of cubes and used 1 Tbsp oil for each cup) and some spices, my current fav being Herbs de Provence (There was a spice sale at Big Y!!!) I threw in a little salt and pepper and tossed the mixture together in a stoneware baking dish. I covered it and baked at 375 degrees for a little over an hour-- until pieces were a nice golden brown and very soft. Also, since there was a lot of rutabaga in the dish, I stirred the mixture up every 20 minutes or so. My husband and I will have these tonight with dinner! Maybe one day B will get some spices under her belt and we can use this recipe for her!!!! Anyways, I of course taste tested this concoction and it was quite good. The rutabagas are pretty sweet so I added a little more salt than I normally would to tone down the flavor. They were delicious!

Saturday, November 13, 2010

Check out the New Page!

Check out Baby B's Top Ten--- lists of our favorite new FPIES friendly finds. We can tell you what, where and how to use them! Let us hear your feedback and post any FPIES friendly finds that you and your little "cooks" have found!

Wednesday, November 10, 2010

Holidays, here we come!

Today I picked up some pears for our Thanksgiving Pear Pie and I have a batch of hemp seed butter in the fridge to make into mock-peanut butter cookies. I also bought a box of candy canes that are just corn starch and peppermint extract and corn syrup (oh so healthy! hahaha) and I plan on trialling those and turn them into peppermint fudge (by melting them with homemade sweetened condensed hemp or coconut milk).

We will be busy baking for the holidays and making feeble attempts at cleaning ;). I can't wait to decorate! But the holidays bring on a little pressure for new food trials and since we are still in food limbo, I am antsy. We have candy canes, marshmallows (made with tilapia gelatin rather than beef or pork gelatin!!), and chocolate (allergen free) to trial in addition to our "real" foods-- rutabagas, papaya, beets, millet, and maybe, just maybe, tangerines! (I really want to put a Christmas "orange" in her stocking--- it is a family tradition!!!) We are also looking at trialling raspberries, strawberries and/or blackberries. And in order to make this stinkin' yogurt thicken, I think I may have to start a trial of tapioca, as I have heard of others having success with this. And if you've done the math, there is NO WAY this will all be trialled before Christmas or the new year, but we have big aspirations. I really want her diet to be nutritionally sound enough for her to be able to eat without needing breast milk or formula as her primary nutrient source by her second birthday, only 4 months away! I know it wouldn't be the end of the world if she had to go on formula, but I am so happy that she has been able to nurse for so long and so successfully, and I really don't want her to have to rely on formula when I have doubts that she will even like it, let alone drink it (She still only drinks coconut milk and water from a sippy-- nothing else, not even breast milk!)

The plan is still to begin weaning at 2 but I may chicken out. . . how can I take away the one thing that has really helped her to SURVIVE through all of this and has been such a huge comfort, if she isn't able to have a "just foods" diet?

Quinoa Fun Facts!

Tuesday, November 9, 2010

Day One of Omeprazole Retrial

Today B got a half dose of the meds in the AM and in the PM. Some reflux symptoms popped up, but all very manageable. The biggest changes were mood-- I had a very fussy, clingy girl on my hands!-- and this weird rash. It wasn't there right after I gave her the PM dose but a couple of hours later, this scaly, bumpy rash appeared all over her legs. No new lotions, fabric soaps, etc.--- we haven't changed any of this in months or more. It looked exactly like the rash she got when we were using soaps or lotions with soy in them (several separate occasions, same rash). The bumps are like the little bumps we saw in the patch test reaction areas-- very close together and scaly and red. The night is already off to a rough start but I am hoping that she pulls through. I think we will be emailing the allergist in the AM and saying that the med is a no go. We even had diapers this afternoon with undigested food again. . . Haven't had any since we cut out the med.

I am hoping that we can stop tinkering with non-food items and get back to food trials. The holidays are coming and I really wanted to add a few more things to B's list of safe foods. I hope we can be venturing into the land of rutabagas very very soon and them on to papayas!! Here's hoping for a night of sleep!

Monday, November 8, 2010

And back again

It's been a few days since the last post and we are just pluggin' along. Still no new food trials as we are trying to get this reflux med thing sorted out. The allergist wants us to give it a go once more at a half dose and then if her symptoms return for a couple of days, we can cut it out again. A little background--- omeprazole is our current nemesis, as it immediately caused my B's previously controlled reflux to become uncontrolled and continued to worsen it over the course of a week. By the end of those few days, NO ONE was sleeping much at all. She was up 5, 6, 7 times a night, barely napping or no naps at all, crying out in her sleep during the little bits of sleep she did have. . . The reflux was getting rough-- gagging and excessive swallowing, lots of wet burps and wet, painful hiccups. . . She also had some lower GI issues that we attributed to the probiotic, which we started at the same time (bad mama!), but interestingly enough, those cleared as well within 24-48 hours of stopping the meds. There are no known allergens in the med and we had it compounded without flavoring so nothing there either. . . sigh. Let's hope round two doesn't escalate too much. We really need to get on with these food trials!

The coconut yogurt has not been setting up for me, even with the addition of the arrowroot. It does smell like yogurt and tastes like yogurt (it tastes quite good in fact) but still is the consistency of milk. Instead of tossing this last batch, I think I will make little smoothies for B instead. Cook the fruit, freeze it, then puree it with the yogurt. It will be a thin smoothie, but she still balks at thick foods and drinks so it should be perfect consistency for her. With a little mango and banana, it will be a true tropical treat!!!

Some new recipes will hopefully be coming this way soon-- I have several updates to add, just need to find the time!! I promise to post soon! Until then, good luck and happy food trials to all! May they be productive and uneventful!!!!

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!

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 ( 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!!!!

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!

Sunday, August 29, 2010

Mango Monday. . . da da, da da da da. . .

Started our mango trial today and gearing up for tomorrow's mango moment. B did pretty well with it and seemed to like the taste but then again it was like a little mango boat in a sea of cooked bananas. . . Haha. "Mango" has been one of her favorite words for a very long time (every juice bottle she sees, she proudly proclaims "MANGO juice!!!" I guess I drink it often. . .) and now she can actually eat the coveted fruit that she so often speaks of! She had a rough time going to sleep tonight but we are moving out of the hotel in the AM, so our day was fairly chaotic, so I am pretty sure she was just responding to our anxiety and all of the changes. We will have to take any sleep changes with a grain of salt, I think, since we will be in our new house this week (!!!!!!!!!!!!) and I am sure it will take some getting used to for her. Plus, we won't have any furniture for another week and a half, so it might seem a little strange to her. Who knows!

Stay tuned for some new recipes about to appear here on B's kitchen blog-- hemp milk fudge, hemp milk frosting, hemp milk yogurt, and many many more to come! Now that I will once more be reunited with normal kitchen appliances, there is no limit to the things we can create with any and all new safe foods!

Saturday, August 28, 2010

On the Eve of Mango

Well, hemp milk is a pass!!!!! (when cooked!) So that is great! I am still having trouble getting it IN B, but hey, toddlers are known for their pickiness and she is definitely no exception. She is still nursing 8 or more times a day, so we really don't need to push it too much, though I will still be aiming for her to have 4-8oz a day, in one form or another.

So on to our orange friend-- mango! I craved mango constantly when I was pregnant (actually, I craved mostly orange foods-- go figure. Carrots, mango, oranges, cheese, and more cheese. . . ) so I am hoping that what she liked when in utero will transfer to something she can eat as a toddler. I have a whole bag of it in the freezer and am currently debating how to prepare it. Should be interesting! I will keep everyone posted! Wish us luck with our orange friend!

Thursday, August 26, 2010

I Knew I Loved Masa!

Ok, so its no secret that I totally HEART masa (thank you, WICO dietitian in Japan for suggesting we try it with B 8+ months ago!!!!!) but really, I am now super duper in love with masa! I haven't tried this recipe yet but since it involves chocolate and a few months ago when sadly eliminating chocolate from my diet I discovered that B had issues with the SOY in the chocolate brand I was eating, but not the chocolate itself. . . I really would like to try this! I am always looking for ways to beef up my supply. Nursing a toddler 8-10 times a day who is as busy as B is quite a feat! Anyways, here is the link if you are interested. And again, if looking for Masa, check out whole foods, Hispanic grocers, and

More progress!

It seems as though our hemp trial is looking up! Today was day 5 and she had 16tbsp. I mixed most of it with her quinoa flakes instead of water and for the remaining milk, I mixed it in with her cooked banana slices. Again, she didn't eat all of it, but definitely most of it went in her little tummy. And once more we had an explosive, slightly less slimy green diaper a couple hours later but then nothing more for the remainder of the day. Her sleep last night was pretty good and she took an awesome nap today! She went to bed fairly normally and has not been up yet, which is an awesome sign. Tomorrow we are going to stay at the same amount and then maybe increase on Day 7-- haven't yet decided. I am very optimistic that we will be adding a new safe food. . . :)

Wednesday, August 25, 2010

A little bit of an improvement. . .

Ok, so today we tried ditching the spinach for a couple of days and replacing the vanilla unsweetened with the original unsweetened hemp milk. An hour or so after breakfast (she had 8tbsp hemp milk mixed with arrowroot, banana, my vanilla extract and a pinch of sugar-- hemp milk was boiled before adding. She also had her normal pears.) she had a nasty, slimy, green and explosive (oh my!) diaper and I thought "Crap! We're done for!"

Well, despite her ridiculously short nap today (after a very rough night last night) and some minor reflux flares, she seems to be doing a little bit better. Yesterday, her mucousy green diapers had increased to 4-5 a day and today there were only two-- one before breakfast and one after. The skin on her bum is much happier than its been in a while!!! Let's see how tonight goes, see if there is anything to this reflux and then see how tomorrow goes (16 tbsp of hemp milk!!!) and then we will weigh in. I am really hoping that by simply cooking the milk and by going with the plainest variety, that we will have a winner.

If things don't improve or if they worsen, I am considering stopping the trial for a few days, making the hemp milk homemade so I know EXACTLY what is in it, and then going from there. Based on my online research (which I understand is limited), there is little to no likelihood of her actually having an allergic response to hemp itself. So that gives me hope. I have a recipe for quinoa milk, which I am planning on trying anyways, but would really like the added benefits of the hemp. Hopefully there will be some positive news in the AM!

Tuesday, August 24, 2010

A New Direction

So we are going to shake some things up with our current trial, other than the carton of hemp milk itself. We are still seeing increasing numbers of explosive diapers, green and mildly mucousy. I am hoping it is just an adjustment since we haven't seen any reflux and no vomiting. Other than her telling me "tummy sad" this afternoon, her behavior seems pretty normal for her willful toddler self. :) Tomorrow we are switching to the unsweetened original in case the vanilla flavor in the unsweetened vanilla is causing an issue and I am taking away the spinach for a few days (she has had green poo every day since starting spinach over a month ago because of the spinach coming out in her diapers) so I can see what her non-spinach poo looks like with hemp milk. Also, I am going to try cooking it to break down the proteins further and see if that helps as well. Tomorrow is day 4 and I am really really hoping that we see B turn a corner and start tolerating this stuff a little better. Maybe a pudding is in order. . . .

Monday, August 23, 2010

Hemp Milk Trial!

We are exploring the waters of Hemp Milk and are now on day two, with two tablespoons this AM. So far it seems ok, but there is some questionable stuff going on that we are hoping is simply adjusting. A blackish green explosive diaper 30 minutes after her afternoon nap and a HORRIBLE night last night for sleep. But she went to sleep in less time tonight then she has in weeks and she has been in a great mood, plus no reflux flaring up, so I am hopeful that this is simply an adjustment. To be on the safe side, we are switching from the unsweetened vanilla hemp milk to regular unsweetened tomorrow. I think tomorrow we will have enough to make arrowroot pudding (B is refusing to drink the hemp milk but I have been successful in sneaking it in her foods). Keep posted for some hemp milk recipes to come-- I plan on having fun with this food trial if it is a pass! So much versatility-- cross your fingers for us! I hope everyone out there that is in the midst of their own food trials is doing well!

Friday, August 20, 2010

Back to her vegetarian ways once more. . .

Well, pork was a semi-bust. . . after hearing back from the allergist and much discussion and mulling over between my DH and I, we decided to pull pork for now on the basis that we and the allergist think it is either (a) a minor reaction building up to something bigger potentially or (b) her body is not yet ready to tolerate the fattiness/greasiness of the pork. So we are not writing it off entirely-- we are just going to give her body a few days off and start with a new food trial of something else. Either hemp milk or mango, maybe pineapple. We shall see. Decision will be by Monday!

Since stopping the pork on Thursday (she last had it on Wednesday), B has been sleeping so much better-- no crying out in her sleep, not up and down all night long. Also, the AM reflux is completely gone and the majority of ANY reflux symptoms during the day are gone. She only got the hiccups once today and it lasted all of a minute or so. AWESOME. I am a happy mama that she is feeling better but still really discouraged about the pork. It is good that it wasn't really a reaction like how we are used to dealing with, but I am still disappointed that we can't add it into her diet yet. She really liked it!!! It just didn't like her. :( Maybe the next trial will be a go! There are still a lot of foods out there to try and she is bound to be successful with at least some of them, right?!

Also, we got the news today that our patch testing is tentatively scheduled for the 6th of September, so I am super excited about this. I know they are doing a bunch of grains and milk but I am not sure what else will be tested. I really am interested to see about dairy, but I think we will still end up with a hospital trial for that one as well as wheat, based on what the doc told us. I will keep this updated as to our results. Hopefully it will be a good guide to help us build up B's very corny diet!!

Tuesday, August 17, 2010

UGH! Toddler sleep-- or lack there of. . .

So still trialling pork and sakes alive, this child will not sleep! B is very verbal and yes, I am super proud of her for this, but she is like a crazy encyclopedia audio book of her life when it is time for bed. She WILL NOT stop talking for up to 2 hours! With intermittent episodes of screaming and arching her back, mind you. So here is my question, normal toddler woes or significant sign of upcoming reaction? She is very restless and cannot get comfortable-- the excessive talking feels like she is actually trying to distract herself. I know she is tired-- we are very busy!-- and I have been considering cutting out her nap (1-1.5hr nap, once on most days) which I hate to do because we have only had 5 short blissful months of nap-taking EVER, but this kid has GOT to sleep at night. ARGH! Insight or ideas? Also, it is significant to note that we are STILL living in the hotel and still do not have a completely established routine (I try but hotel life and dealing with all of the stuff leading up to closing disrupts it) so I am sure that could be contributing. . . the behavior has been almost every night though since beginning the pork trial. I find it odd. I hope that is all it is. Odd. One day I'll sleep. . .

Monday, August 16, 2010

Moving through the pork trial. . .

Still going with the pork trial and today is day 4! Three more days to go! Today we increased her serving to 2 tbsp and so far we are about 1.5 hours in. It seemed to be smooth sailing until last night, about 6.5 hrs after she at 1 tbsp of pork. When I was walking/rocking her to sleep, she got those weird, heaving hiccups that she hasn't had in awhile. They were different from how they were with the spinach and the quinoa, very wet and I could feel her whole body heaving with them. They went on for about 15-20 minutes and then stopped as abruptly as they started. So hopefully, they mean nothing.

I really do hate these stupid food trials and all of the waiting and not knowing. I want her to catch up to her peers and I want her to ENJOY eating and I want to not have to read everything (and I hate that I have to typically punctuate that reading with "Nope, sorry sweetie, you can't have it") but I really hate these trials. It is hard not to read into everything and yet it is hard to know when you ARE reading into something or if you really SHOULD be concerned. And then when you think you are reading into it to much and you tell yourself to relax and then they have a full blown reaction the next day. . . BLAH. Sorry to vent but I really wish one of these food trials would just be NORMAL. Our corn trial and our arrowroot trials were the last ones that we had no symptoms of anything (other than the typical texture issues when we started the Kix) and those were in December and January. Enough venting!

So if the pork ends up turning out as a pass, I am thinking of trying mango next week. I CRAVED mango, banana and pineapple when I was pregnant so it will be funny to see if she really likes the mango. I would love to add more variety to think bland little diet and certainly some more color!!!!!

Saturday, August 14, 2010

My Baby is no longer a Vegetarian!!!

Not that I ever intended for her to be a vegetarian or that I even assumed she would be, but starting the pork trial today made me a little sad, selfishly so. I loved that my little one shared my vegetarianism! I knew it wouldn't last though-- even if meat is a complete fail initially with FPIES-- she used to bounce all around when I would cook bacon for DH when I was pregnant with her!

Anyways, day 1 went off without a hitch. She was pretty fussy in the afternoon and evening, but our lives have been so chaotic lately, it was probably just that. She has 2/3tsp that she actually ingested once I started putting it on the back of her tongue and about 1/3 tsp ended up permanently on the floor/walls/table/where ever she spit it out. (Initially just gagged everything out. So lovely!) SO not bad! What I did to prepare it: I found a nice organic pork chop, thinly sliced, and I rubbed it down with canola and a little bit of salt. I then placed it in a little foil packet and baked it (in the toaster oven) at 350 degrees for 45 minutes. It was tender and moist. I cut it in little 1cm by 1cm pieces (approximate) and shredded about 1tsp of it for her to try. Tomorrow we double the amount and so on. I put the little pieces in groups of three and made mini foil packets, threw them in a freezer bag and froze them for the rest of the week's trial. Here is hoping it is a success! As my DH noted, this is the first trial she has had in like forever that hasn't at least produced a questionable diaper or reflux symptoms within the first 24 hours, so this really could be a great sign of things to come.

So I am sad to be the only veggie in our house again but happy that B seems to be off to a good start, even if it is with a meat! Keep your fingers crossed for us!

Wednesday, August 11, 2010

Our First Appointment!

Well, the day finally came and went! Yesterday was B's first appointment with specialists (GI and allergist). We saw the EGID team at Children's Hospital of Boston. We have waited 11 long LONG months for B to finally be seen by specialists! And here is the scoop:
First off, we were very impressed with the team of docs and other staff. They were great with my fiesty B (GI had to examine her while she was mid-tantrum. NICE). I really liked that once they called us back, we stayed in the same room and the various docs and nurses came in to see us, rather than B having to be shuffled around from room to room. After seeing the various docs and nurses (we even saw a social worker who gave us info on support resources online and talked with us about the day to day stressors of having a child with food allergies), they confer with one another and produce a typed report giving you a summary of the visit and what the plan is for moving forward.
So here is what we were told. The allergist gave us the go-ahead to shorten food trials from three weeks to one week trails (yikes!) I am super nervous, but we are going to try it. He said that if she starts having more reactions, we will back off, but because of her age she needs to start increasing the amounts of foods to try. He gave us an interesting list of foods to avoid due to their relation to other foods she has failed. For instance, they are considering soy a tentative fail and we are to continue to avoid it like the plague, even though she has never ingested it directly, just reacted with skin contact and through my breast milk. He wants us to avoid all common FPIES triggers, plus wheat (which will be a hospital trial potentially along with dairy), tomatoes, white potatoes, and all meats except for lamb and pork. And of course we are avoiding anything she has reacted to, major or minor. He seemed hopeful since she recently passed quinoa and spinach that she will continue to have more passes than fails. He also said to watch the reflux and rashes, but unless they seem to be worsening, we should be ok. He will be calling us to do our patch testing and they ran full bloodwork on B and did blood tests for screening for different disorders and allergies.
The GI was great too-- very friendly and excellent with B. He was going to do a rectal examine but I guess that freaked out B because when he left the room for his equipment, she made quite a messy diaper. Since he had a fresh sample, there was no need for the rectal examine! I was quite happy for this!!! That would have been ugly! Good girl for cooperating! He said that since she has started gaining weight again (yay B! Holding strong at 23lbs!!!) he thought we could postpone thinking about a scope for now unless she shows more fails in the food trials and we see her starting to lose weight again or simply not growing as she should. He also ordered a few tests to be done on her blood draw and we should find out those results along with the ones the allergist ordered tomorrow or the next day at the latest. The plan is still to go directly to the ER anytime a vomiting reaction occurs and to inform our docs (after the reaction occurs) of any minor or major food fails. Both the allergist and the GI said to pull a food if we see worsening reflux, diarrhea and behavioral changes-- we don't have to wait for vomiting. And as we had already been doing, they said to wait a few days once B returns to baseline following a reaction and then start trialling a new food.
So all in all, I think it was pretty productive. We will meet with the dietitian next time as well and hopefully B will have a little more variety in her diet at that time. It wasn't even a terrible drive-- a little over two hours, mostly due to traffic. Very direct, however. The hospital itself was great and B loved all of the artwork and the large fish tanks ("Nemo swimming! Ponyo swimming! Hi, fishies!!!!!!") Definitely worth our time and I feel more confident moving forward with some food trials now that we have some seemingly knowledgeable docs on our side and I have their personal contact info for any and all questions. They advised trying pork or lamb to start (I choose pork! I still cringe at the idea of my baby eating other babies! Guess it is the vegetarian in me. . .) and then trying to stick to foods in the same families as foods we have passed. And on that note, I think we will be doing pork, then beetroot, then amaranth, then sunflower seeds (in the form of homemade sun butter-- the commercial sunbutter is made on the same equipment as soy nut butter so we are avoiding that). I am still looking around and think mango may also be in our future. 
More to come, but for now, I am spent. Life outside of FPIES has been so crazy too. We are still in the hotel and we close on our house at the end of the month. Then this moving adventure that started in May can finally end!! We got word that our household goods have FINALLY arrived stateside and should get those shortly after getting into our house. Once we are settled, I have some serious recipe experiments to conduct. I will have my kitchen back! Keep posted! More recipes will come this way!