Saturday, May 28, 2011

Swallowing, Scope and Surrender

Its been a little bit since I posted last. For one, I wanted to leave up our fundraiser post for a little bit to raise awareness and to direct people that found us on here from our flyers. And two, I haven't really known what to write. With our posts, I like to try and motivate, to try and encourage creativity, to try and find hope in the midst of all of the frustration.

Well, today we are all about the frustration around here. B is ok. But something is up and we just can't figure it out. This started a few months ago when her food aversions started kicking up again. Then we had a month with random vomiting episodes when she was eating--- never seemed to be any causal link between a specific food and the vomiting--- it just simply WAS. After the fourth episode of stomach emptying vomit, I called the GI and he suggested a swallow study. We went in the day after Mother's day and had it done; they used flavored barium. For one, the study itself took forever-- they kept tilting the table side to side and back and forth because the barium wasn't moving quickly enough through her system, they said. My poor girl was not having any of this and had to be held down by two staff members and N and I. I ended up with a fat lip and B had tons of bruises. :( Despite the slowness of the barium's movement, we got the report that everything looked normal! Great! Well, less than 24 hours after the barium, the mucousy, black diapers began, accompanied by lots of reflux flares and a horrid diaper rash. For the first few days I thought, this must be normal-- her body must be trying to move everything out, right? Well, by that Wednesday, she had successfully passed the barium so I thought, ok, it will be ending. WRONG. The diarrhea continued and even worsened in different intervals and her rash caused skin breakdown and bleeding once we were a week out from the test. She had welts on her diaper area that looked like horsefly bites. Awful, awful. For the first week after the procedure, she was refusing almost all food and most drink. After the first week, she started drinking more, though still wasn't even nursing very much. When we hit the two week mark she started to improve. Apparently, there are all sorts of things that can be present in flavored barium (won't be giving her THAT again!) and in my mind, she reacted to something in it. Both the radiology and pediatrician's offices said that they had never heard of B's response as being anything like a normal response. At this point, we were seeing a lot of food refusal still.

So we got through that and B's diapers still aren't back to her "norm" but if there is one thing that we know about FPIES, reactions often long overstay their welcome. We had been holding off on food trials until her diapers improved so I decided to try a few spices/herbs since her eating was still horrible. I settled on cinnamon and made the most delicious cinnamon graham crackers (IMHO!) The first day, she ate a cracker by scraping her teeth across it until she ate it via tiny tiny crumbs. This behavior concerned my but at least she was EATING, even if it was in this manner. She told:"Those are your favorite crackers that you ever had" ("you" meaning herself of course, lovely toddlerisms). I was so stoked. But at bathtime, I took off her shirt and the skin between her shoulder blades was bright red and covered with mosquito bite sized bumps, kind of in clusters. After bath, I put on hydrocortisone (Rx) and gave her oral benadryl. By the AM, it was completely gone-- just a bit of scabbing from where she broke the skin itching. I gave her another cinnamon cracker that AM, within minutes she was itching her back again and at just over an hour, her eye started swelling. It wasn't bad but it was noticeable from across the room. Contacted the allergist and he confirmed that cinnamon was likely a fail.

And so, as always, we moved on. We moved forward. But then I reintroduced fish to B after not giving it to her for a couple of weeks (she just kept refusing it so I thought she needed a break so it could become "new" again). She acted excited and acted like she liked the taste, just as she did when we first trialled it. But then she was chewing and chewing, and not swallowing. She was taking tiny bites and I had cooked the fish until it was literally falling apart, it was so soft. But she ended up gagging and needing to spit it out after about 10 minutes of attempts at swallowing. And then she tried to eat  some more and the same thing happened. At that point, she started refusing the fish again. That was when I thought, "We have a problem." She wanted to eat the fish but something was stopping her from swallowing.

So in the AM, I called and left a message for the GI. When the nurse called back, I told her about the fish and that B was doing the same thing with baked goods (cookies, muffins and cakes) and we had initially assumed it was behavioral but after seeing her want to eat and become frustrated when she couldn't swallow, we got concerned. After a bit, we heard back from the GI-- they want to scope her. An upper and a partial lower (he said it will be very simple so that is good). And now we wait-- it sounded like it will be scheduled soon and at least N has some scheduled time off from work coming up next week--- hopefully it will all coincide.

I am on the fence-- I want them to find something but I don't. I want there to be answers but I want there to be an end in sight. There are so many thoughts going around in my head and I am so torn as to what is best for B, what could have been done better by myself in the early days, what could have changed the outcome. I know this is a routine procedure, I know it was only a matter of time before she had to have one done, I know FPIES is a mean old beast that I routinely would like to kick in the head. . . . but I wish I knew why all of this is going on. Why the IgE symptoms--- the last three food fails have been accompanied by hives and/or swelling as well as FPIES symptoms, ranging from mild to bordering on severe. Why have the two most recent tests-- the SPT and the barium study--- produced reactions but caused only negative test results? The most overwhelming thought, though, is this--- I want this to be done for her. I want B to have a break. I want her to go to playgroups, do toddler stuff, all without the worry following us around that there will be a reaction, like we are constantly trying to outsmart and outrun this entity that we know as FPIES. I am done running, I am done dragging her along. FPIES--- I am B's mama and I am telling you "NO."

Friday, May 20, 2011

B's Fundraiser! Eat sweets for these little sweeties!

This Tuesday (May 24th), N and I will be at the Westfield, MA Friendly's Restaurant and Ice Cream Shop on Southampton Rd--- a family fun night we are hosting to raise money for the FPIES United Family Fund, a fund set up through the Children's Hospital of Philadelphia to raise awareness and to raise money for FPIES research. This is, of course, a nonprofit organization.

So we are hosting the Family Fun Night and if we bring in at least 100 extra people (more than their average), Friendly's will donate a percentage of all sales made between the hours of 5pm and 8pm. There will also be a raffle (raffle tickets are being sold right now!!!!)-- prizes are from the East Mountain Country ClubSimply Skin by Angela GraceJelly Belly's Pools and Spas, a local AVON representative, Puffer's Day Spa and Salon and possibly a very cool children's museum, that I cannot yet specify (Will get the go ahead on Monday!) So a little something for everyone! I am still waiting to hear back from some other vendors, so the list may grow, and we are STILL taking donations for the raffle, so if you would like to contribute, please leave a response below!!!

So come one come all! And once this is over, I can get back in the kitchen! Between B's barium debacle (more on that next week) and completing my music therapy recertification requirements, plus this fundraiser and plus the PIC project, I have been going NUTS around here trying to keep everything straight! More recipes by the first of June or sooner! And that is a promise you can take to the bank! Maybe I will post several at the end of next week if we get a nice turn out at our Friendly's event. Yes, I am bribing participation with recipes. :)

Wednesday, May 11, 2011

Even Mamas Deserve a Cookie!

Its been an interesting week-- B's barium swallow study was on Monday and it has been destroying her tummy ever since-- reflux flares, black mucousy diarrhea, awful rash and broken down skin. . .UGH. Her boycott of baked goods has intensified and she is only showing interest in some fruit. I made these cookies this AM in hopes to entice my small sweetie into eating sweets. . .and I found a new and very dangerous cookie for mama! ;) B did eventually sample them tonight after we showed her how to dip the cookie in her coconut milk. She seemed to like the taste but a lot of textures seem to be bothering her lately, so she only ate a few crumbs. 

I personally love this recipe and N and I could not stop from eating them! They taste like peanut butter chocolate chip cookies! Since I am still eliminating all nuts, I miss PB like crazy! These cookies really filled the void for me tonight! Enjoy! These are free of the top 8 and free of all FPIES common triggers, they are corn free, they are vegan and they are amazing! 

Sunflower Seed Butter Chocolate Chip Cookies

1 cup plus 2 Tbsp sorghum flour/ millet flour/ corn flour
½ cup plus 2 Tbsp quinoa flakes (or sorghum or millet flour)
½ tsp salt
½ tsp baking soda
1 small pear or small apple, peeled, cored and finely chopped
1 cup sunflower seed butter (or other alternative to peanut butter, such as hemp or almond butter)
¾ cups sugar
2 Tbsp arrowroot (or other safe starch)+ ¼ cup very hot water
¼ cup palm oil shortening or coconut manna, softened not quite melted
2 tsp vanilla extract
½ bag Enjoy Life Chocolate chips (or other safe chips)

Preheat the over to 350 degrees F. Line cookie sheets with parchment paper. In a medium sized bowl, combine the arrowroot with the bot water. Beat for several seconds with a whisk or fork and then allow to rest. Using a second medium bowl, combine flours, salt and baking soda. Set aside. Add the fruit, sugar, sunflower seed butter, shortening/manna and vanilla extract into the arrowroot bowl. Blend well with electric mixer or pastry blender. Mixture should be gooey and well blended. Slowly add in the flour mixture, blending while adding. Blend with pastry blender until flour is completely mixed into the batter. Add in chocolate chips, stir well. 

Using a small ice cream scoop or melon baller, form balls of cookie dough and place on baking sheets in rows. Press gently with a fork to flatten slightly. Bake for 12-14 minutes at 350 degrees or until cookies feel firm and are slightly browned on the bottom. Allow to cool on baking sheet for 10 minutes before transferring to wire racks or a plate. Cookies will solidify further once cool. ENJOY!!!!!!!!!!!!!

Tuesday, May 10, 2011

FPIES as a Garden-- Hedging our Bets

The garden is arranged with neat little rows. . . three varieties of beets (peppermint ones, golden ones, and detroit dark red-- had to represent my heritage, yes?!), baby spinach, and broccoli. And then, two more veggies. But we only have three safe ones!!! And so, I am hedging my bets.

I planted cauliflower on one far end and tomatoes on the other far end of the garden-- all of her safe foods are clustered together but the unknowns are on the outskirts. I didn't even plant any known UNSAFE foods--- want this to be as clear cut as possible. A definite fail or a definite pass.

I think cauliflower is a good bet-- broccoli is a big favorite of B's and I would let her eat more if her body didn't freak out every time she ate more than a taste of a veggie! And cauliflower is similar to broccoli, right?!
With beets, spinach and broccoli, she only gets 2, 1oz servings of each, each week. SO a veggie a day with a day of veggie rest in between. :) We still have to be careful with preparation and they all have to be twice cooked. . . but I figure if she has more safe veggies, even if they are all conditional foods so to speak, we could give her little bits of each a couple of times each week and fill in a few more holes diet-wise.

Tomatoes are a mama-gut bet--- I have a good feeling, nothing more and nothing less. And they are different. Maybe different enough to be safe? I am hoping!

So later this week when I surround my garden with happy little marigolds (to act as a pest barrier) and a happy little fence (bunny prevention!!!), I hope that we are hedging our bets as carefully and as effectively as we are hedging our garden.

Sunday, May 8, 2011

FPIES as a Garden

Spring is certainly upon us and thank goodness! I thought I would never see anything but a white lawn staring back at me whenever I looked out of our windows! We haven't quite lived in our house for a year now and there is a TON of yard work to do, thanks to the lovely prior owners. SIGH. I do like working in the yard, creating something out of this very messy blank canvas that is out there in the back yard. As I was digging, planting and weeding today, I couldn't stop thinking about how similar all of this work was to our everyday work with building B's diet in a safe and (hopefully) interesting way.

One of the previous owners (I am guessing YEARS ago) seems to have been something of a gardener. I keep unearthing randomly placed flowers and shrubs, and slowly as we clean things up, I see that there were once gardens in these places. Hostas, hybrid lillies, ornamental shrubs. . . I keep finding these in the strangest of places. Last fall, I dug up and transplanted about 40 (!!!!) lillies from various spots in the gardens and yard. There was a huge mass of them in one garden in particular-- becoming root bound and unhealthy. So I separated them, gave them new homes, and now in the spring I have these huge new plants, flourishing. Plants that I was hesitant about keeping in the fall have now become beautiful additions to the garden and are thriving.

With B's FPIES "journey," we have seen a lot of parallels. We are constantly tending the garden, adding in new "plants" and hoping that they will thrive and that the garden itself will improve from the additions. And when the new "plants" fail, we till the soil and try again once the ground is smooth again and ready for planting.  Zantac and probiotics control the weeds and keep the garden as free of harmful pests as possible. And the biggest parallel-- uncovering surprises. As I dig and reshape our yard (with the help of N of course and with the encouragement of B from her station in the sandbox), I find treasure in the compost heap (healthy, beautiful plants), treasure in flowers that I was sure would not winter over (but did!!! Even despite our snowy months!). Sure, most "common" toddler foods don't affect the B garden positively (dairy, wheat, etc), but we have found treasure in things like quinoa, mango, and coconut, foods I never would have expected to be staples in the diet of a toddler. And the hidden surprise of a food that was only tolerated in tiny amounts last year now becoming a staple in B's diet. Now being tolerated by her body, now being welcome in her garden.

Of course, like the garden, tending to our children's FPIES is constant work. But there are rewards amongst the weeds, amongst the compost. And there are surprises! And there is, even in the tiniest ways, eventual growth. So I will, as the rest of you will I am sure, continue to dig, continue to shape and continue to nurture, in hopes that one day, we will see the ultimate growth that we are hoping for, for her body to begin to tolerate more than it rejects, for my beautiful flower to be free of the threats of FPIES.