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.

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:

Crust:
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.

Filling:
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. . . )

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. http://www.pickyourown.org/applepiefilling.htm

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!

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!

We CAN do THIS

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!).

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.

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!

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!
http://babybeesfpiestestkitchen.blogspot.com/p/baby-bs-top-ten.html

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!

http://www.incaorganics.com/seattle_times.htm

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!

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!!!!