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!!!!

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!!!!

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!

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!

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!

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. . .

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 :).

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?